WikiAdvocacy - User contributions [en]

Conferences, Workshops, and Meetings for Affected Individuals

2021-09-21T02:09:46Z

Akrokosky: /* Virtual Conferences */

Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of community. Creating these events involves two major tasks: determining the scope and objectives of your meeting, and doing the logistical planning for the event. You can read some examples of other conferences at our [[Setting Up A National Conference]] page.

==Determining the Scope and Objectives of Your Meeting==

Conferences include many sizes and types of events. They can be as simple as an afternoon session with a speaker followed by some social time, or as extensive as a lodgings-based multiday event with a mix of speakers and activities and with meals served on site. Consider these issues as you plan conferences:

*Your members' interests
*Your goals for serving your membership
*Costs
*Available resources

When creating a new conference, survey your members. Ask them what they want from a conference, how much time they would want to spend, how far they would be willing to travel. Ask them what they can afford, and get a sense of how many interested members would require financial assistance. Even if you know for certain that your members need a certain kind of conference or educational experience, the starting point should be what they want.

This is initial part of planning is where you can ask open-ended questions, such as "what time of year works best for your family?"

Tips for Date Selection

#Spring and fall meetings have good attendance. Families may travel during the summer, so offering the meeting as a vacation may have appeal. Winter storms can hinder travel.
#Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
#Consider holidays as you plan events—not just major holidays but feast days and other observances, depending on your members' affiliations. Holidays (such as Memorial Day, Independence Day, and Labor Day) can mean lower rates for hotels in business cities.
#Know when specialists that focus on your organization's condition go to their professional meetings. You may lose potential speakers if your conference coincides with meetings they must attend.

==Your Members' Interests==

Ask them what they want. This is their conference, and it cannot succeed unless it meets real needs. Some questions to consider: do they want a one-day conference or something longer? Do they want to meet on a weekend or weekday? Are there particular holidays that could coincide with this conference? Are there holiday periods you should avoid? What can they afford?

Answers to these questions will help you get a sense of how many people will actually come to a conference, a crucial starting point for planning location and activities.

==Your Goals for Serving Your Membership==

This is where you reconcile your sense of what your members need with what they want, and where you use what they want to create a curriculum for getting it to them. They may say their top need is to learn how to work for a cure for their children. This could translate into a conference in which they get talks about the current state of research from scientists along with workshops about informed consent and donating tissue.

==Costs and Scholarships==

Travel distances, lodging options, speaker costs, and supplies for the meeting will all figure into your final budget. It takes time to establish the details of this budget, but you'll need to start with a ballpark figure. As you consider what your families want and what your organization needs to share with them, you need to go beyond what families can afford and have a good sense of what your organization's costs will be. Consider name badges, signs for the conference site, packets for the members, registration forms, mailing costs, equipment rental, honoraria or gifts for your speakers, day care, etc.

Many organizations provide financial assistance to some of their members. To learn about some of the scholarship programs offered by other organizations, visit [[Scholarships for your participants/families/members]] and [[Setting Up A National Conference]].

Here is what one health advocate had to say about an organization's experience with conference funding and costs:

"We have had all our expenses covered for the past two conferences through sponsorships and low registration fees ($110 for the first family member, $90 for others; no fee for affected individuals or those under eight-years-old). We have a separate scholarship fund for needy families to attend and ask our donors to make a separate donation if they wish to help a family attend. We usually have enough to pay the registration fees and hotel fees for 2-3 nights for 7-10 families. We do not pay transportation. We go by the honor system. If they say they have a need and fill out the simple application form, then we try to help them. We give preference to first time attending families so if someone asks for a scholarship repeatedly I can simply say others that haven’t yet had a chance to attend have been chosen."

===Honorariums===
As for payment to speakers, groups are all over the place on this. Some pay none - though it is certainly just to compensate people for their time, it is hard to find funding for it. In some cases, groups fundraise for an event just for that expense.

For instance, PXE International, a very small organization (budget of ~$250K), gives an honorarium only when the speaker is critical to a meeting (a low vision specialist or plastic surgeon at a patient info meeting) and they can't find anyone else. They have paid anywhere between $100 to $500 for a workshop of a couple of hours.

Of course, top notch speakers charge a great deal - speaking fees for major speakers are in the tens of thousands and occasionally hundreds of thousands.

==Tips for Budgeting==

#Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
#You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
#Plan on gratuities of about 25% for meals.
#You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
#Don't forget conferences badges, printing and mailing costs, equipment rentals, gifts for speakers, and day care costs.

==Available Resources==

Consider in-kind and financial donations your organization can obtain. Is there a church that can offer space for your meeting? Are there manufacturers whose products your membership uses routinely? As with costs, you'll revisit resources as you do logistical planning, but a general sense of whom you can tap will help you scope your meeting effectively.

==Tips for Getting Funding==

#Exhibitor fees average $1,000.00 per booth.
#Give potential exhibitors about 6 months of lead time.
#If a company can't exhibit, ask for a donation. If you receive corporate sponsorships, make sure to provide them with a tax donation receipt.
#Do your members use specific products regularly, whether over-the-counter supplies or prescription medications? Ask the makers to exhibit or to provide a donation.
#If searching for a photographer or videographer to document your event, you may find success by reaching out to local colleges or universities. Students may provide this service for little or no cost.

==Logistical Planning==

Logistical planning revisits the same issues as setting scope and objectives, and you will also get feedback from your members in this phase, but the questions you ask will come with a range of options, as opposed to be open-ended.

There are several major aspects to planning a conference:

*Site selection
*Date selection
*Budgeting
*Funding
*[[Speaker selection and management]]
*[[Childcare]]
*Managing the timeline
*Photography or videography at the event
*Post-event communication

===Room-sharing and things to think about===

*If guests pay their own way to an event, and the organization has a contract with the hotel, the contract should stipulate that guests are responsible for EVERYTHING related to their stays...fees, damage, etc....and that guests make their own room arrangements. That separation should keep the organization safe from liability for individuals’ behaviors.
*If the organization is covering basic hotel costs (say for presenters), the contract should stipulate that, while the organization is paying for the room at the negotiated rate, guests are responsible for incidentals and any other fees or damage.
*If the organization insists on room sharing, things get murky, because proving culpability between two competing stories becomes a challenge. The organization has imposed the roommate requirement, and thereby puts all guests at risk of having a bad roommate. The person whose credit card secures the “incidental” charges may not be the perpetrator of damage or consumer of minibar treats, but that person is stuck with the bill. (Worse, if the organization uses it’s card to secure all rooms, all guests are completely off the hook. Fortunately, most hotels won’t allow guests to register without swiping a personal credit card.) Meanwhile, if the perpetrator does not cover the costs s/he incurs, the “damaged’ guest will inevitably come to the organization for a resolution. To keep the peace, the organization – the entity demanding room sharing – should probably be prepared to step up and absorb the costs and then (perhaps) pursue the perpetrator for reimbursement...or just suck it up as a cost of doing business.
*In all cases, the organization should disclaim to its guests the terms and conditions of the hotel arrangements that apply to the situation and declare clearly that the organization bears no responsibility for incidentals and damage. These stipulations should be stated as a condition of attendance at the event...very likely in a simple, boilerplate disclaimer in fine print somewhere in the “registration” or “invitation” acceptance materials. In registration materials, the financial transaction adds substance to the disclaimer. In “invitation acceptance” materials, it’s wise to get the guest to somehow acknowledge the disclaimer with a checkbox or initials along with a reminder that the hotel will require a personal credit card at registration to secure the room.

==Creative Welcome Sessions and Introductions==

*We have a New Family Orientation prior to the welcome reception. We connect new families with buddy families prior to this orientation and then they meet there. We go over ins and outs of the conference then. After that all families come to a very easy going and loud welcome reception. We don't do larger introductions there. Families can meet speakers throughout the weekend. They can talk to researchers at meals and poster sessions. Badges are color coded by form of batten and bereaved family badges have angel stickers.

*One we've used is cardboard questions...on one side answer Who I was... On the other Who I am now...

*As you know, ours is not a pediatric disease, so I probably am the last person to provide advice----but this year for the first time we had a woman affected with the language form of our dementia record a 3 min video welcome. She was also present and came up to the dais, but given her impairment a recording was definitely the way to go. It was incredibly moving and powerful, and conveyed a level of respect to the individuals affected that we had not before---given that this is a dementia, we historically have focused on the caregivers/families and spoken “about” the individuals affected. I’m just thinking that there may be some parallels here. For you, I wonder if you can select one boy who can talk about something great he’s accomplished this past year? Would be uplifting and a hopeful model for all?

*We have begun to use very pointed questions that one turns to one’s neighbor and shares about – for 2 minutes each. And then popcorn report out…

*Does anyone watch the Tony awards? They pan onto an actor (male or female) and the person says either " I am an actor because" or I am a producer because or they give their 2 sentence spiel. Or they give their spiel and then say. I'm Xxx and I'm an actor.

*We sometimes do table introductions and sharing instead of full room introductions and sharing. Another idea is to have people stand up if they have children 0-5, 6-13, 14-high school, out of HS, and/or some other characteristics.

*We have a mentor program. Returning families connect with new families prior to conference and at conference. We also set up tables by region so families can meet people in their area. We also have a group meeting for Moms only and Dads only.

*Sometimes to shake things up we do a stand up sit down game with fund and serious topics. But my only warning is whoever manages this needs to have a good command of the room. If not you can lose the room.

*Years ago I heard about one group who gave each family a poster and they were asked to bring photos of their family. They arranged the photos, listed where they were from and added any creative comments (hobbies, pets, jobs, etc.. The photos were on display at the Welcome reception and this helped with families getting to know one another early on. This takes some planning and materials and you probably won't get people to bring photos at this late a date. Smart phones have also taken away our spending time to print photos off.

*Our program director is very witty and funny. We have her moderate the ice breaker session and she makes it really fun with a lot of laughs. It seems to relax our members because they are still quite tense right at the beginning, especially the newcomers. Here’s a quick list of things she’s done:
**Standup/sitdown questions (how many conferences?, etc.)
**Purchased beach balls from the dollar store and wrote questions on each colored wedge in marker. Then broke into smaller groups and tossed the ball to each other and whatever question your right thumb lands nearest, you answer.
**Separate into 12 groups by birth month but let the group figure it out on their own.
**Had a huge circle in alphabetical order by last name
**This year she did “the wave” and it was so, so much fun.

*For our first morning session we create tables of 8 people who I put together carefully with newcomers and old timers and a moderator who does a short welcome and then gives a question to be answered by all at the table and they talk about that for about 15 minutes and then move on to the next question – have about 4 questions in all and it is a nice way for everyone to get to know each other better and make some friends.

*We also play “NBIA Bingo” at the end of this session. We create Bingo cards with questions in each block, like “Who is someone who has a baclofen pump?” and they have to walk around and ask people if they fit the question and if so, that person writes their name in the block. First person to get a full card filled out, wins. We give prizes to top 3 and then say that anyone who fills out their card during the day can turn it in for a NBIA pin so that gets them continuing to ask people questions and talking even after the game is over. Takes about 20 minutes or so depending on your crowd to get a winner, so allow enough time or maybe you could make it one line rather than a full card needed to win.

:I create 8 different versions of the game so each person at each table has different questions so everyone isn’t getting the same people and questions. I include a question for every family so you have to know your group pretty well or if desperate I put “Who is someone from Austin, Texas?” Families can go to their participant list and find the name and then search for that family. Also put questions about the organization like when were we founded, etc. and they can ask others or go to our website where they can find the answers there.

*We do what you have always done, but only have 30 families. I say "tell us where you are from and how many conferences you have attended." Recently, I heard a Podcast where the man introduced each speaker by the answer they had earlier give him to this q: what was the last illegal thing you did? Thought that would be a good change (or some other question).

*For our patient meetings, we use "Share your most embarrassing moment" as the icebreaker at the first dinner. Most people actually share something embarrassing, but for those few who don't feel comfortable, we ask them to share something that people wouldn't know about them. This has been so much fun, and the people who have the best stories are usually the ones you don't expect!

*One thing we did a few years ago that worked well was a spoof on speed dating. Chairs were set up opposite one another. On one side people stayed in their seats and on the other side they moved over a chair every three minutes. We gave them a list of questions they could ask one another if they were shy. It worked so well that it sort of fell apart at the end because everyone was talking to each other. Since that was the point I didn't see it as a bad thing. After a few ice breakers we have also started doing a team building exercise. That has been a hit. Last year our conference theme centered around a cruise ship theme. Attendees were divided into teams and given a bag of odds and ends such as scrap fabric pieces, safety pins, ribbon, feathers etc. They were then told to choose a model in the group and create an outfit to wear on a cruise. The creations were a riot! This year we had a wizard of Oz theme. Teams were given materials to make scarecrows. The challenge was half the team was blindfolded. The team members wearing the blindfolds built the scarecrows. The team members without were not allowed to touch the materials but instead had to give instructions to help the people wearing blindfolds. These have been great to illustrate it takes a team to find a cure. It also gets attendees talking to each other quickly about something fun and not too scary. A bonus was using the scarecrows as decorations at our dinner.

*This year we started a private Facebook group for conference attendees and got the excitement started before the retreat. The last couple of years we made the first night a superhero theme so kids would make crafts while parents mingle (during embassy suites happy hour reception) and the superhero costumes and princesses came to surprise the kids and take pictures. We have assigned seating at dinner (so new families are sitting with seasoned families) and have a slide show with the pics of the kids/families from each table as the microphone is passed for family introductions. . The slide show has cute little superhero graphics added to it.

==Use of Breakout Sessions==

It seems to me that giving a specific task is always good, but only if that task reflects the collective needs of the group. I would recommend that you use one of the following approaches:

:Survey attendees ahead of time to find out what they think are some of the barriers and then schedule focused working groups around those topics. Send out a background document ahead of time detailing the responses to the survey and giving people some information so that they’ll come to the meeting prepared OR plan talks for that morning so that they give people background on those issues.

:Organize the morning presentations as panels with a lot of discussion. Make one of the goals of the morning to identify major barriers. Then have a planning group (a few people from the morning presentations) meet to come up with specific breakout questions. Have those same individuals serve as facilitators for those groups (so that they clearly understand the context of why they were chosen).

:Make the breakouts longer and use the first 30 minutes or so to establish shared challenges. Then have the group pick one shared challenge to focus on. It is important for this type of breakout that you have someone facilitating and someone paying close attention to time, since you have to make a transition from general to specific.

Also, consider using activities to help determine priorities for your community. For instance, I organized one session at the conference (that received very positive feedback) for which I used the following format:

*One, overarching 10 minute presentation to give context
*Short 5 minute presentations (these could be examples of actual research projects that have failed or overall presentations of barriers)
*Break the group into small teams (those sitting around them, 4-5 people max) to come up with solutions in 30 minutes
*One person from each group presents those solutions
*Each individual votes on priorities (this was specific to funding for our session, but could also be used for organizational priorities or something similar).

==Tips for Managing the Timeline==

#Start planning your conference 12 to 14 months before the date.
#Book the site 12 to 14 months in advance.
#Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
#From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
#Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
#Mail registration forms about six to eight weeks before the registration deadline, but prepare to receive the majority of registrations just after the deadline date.
#As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
#Finalize the conference agenda as the registrations are coming in.
#As your registrations are coming in, prepare packets for your attendees.

Careful preparation means more time—and energy—to put out the inevitable last-minute fires!

==Site Selection==

Are your members clustered in one area? How close is your organization's location to the majority of members? What people resources do you have for the nitty-gritty of planning and working with the conference site?

What are your space requirements? You've already decided whether you need a church basement or a hotel; do you need multiple rooms for concurrent sessions? For exhibitors? For socializing?

==Tips for Site Selection==

#The number of people interested is the biggest factor in establishing the scope and location of your meeting.
#Hotel rates should be around $100.00 a night.
#Does the site you are considering have an indoor pool? An area where families can socialize?

For conferences in which your organization is expecting a smaller crowd, there are places the conference could be held that may be less costly than a hotel. One such venue could be faith-based or non-profit related organizations that have conference centers that are available for other organizations to use for a short period of time. [http://www.younglife.org/Camping/Pages/RetreatsAndConferenceUse.aspx Young Life] is an option for this. Furthermore, your organization may want to consider state parks, or university-owned meeting space or property, for example [https://www.bradwoods.org/facilities/meeting-spaces/ Bradford Woods].

==Virtual Conferences==
Virtual conferences have popped up over the last several years for many reasons, including a global health pandemic in 2020. Here are some tips and points to consider from those who have trialed this new format:

*To charge or not to charge - While your organization won't have many of the typical expenses (meeting room rental, food, etc.), there still certainly are costs for the meeting. Many have found that charging at least a nominal fee makes it more likely that participants who commit will actually attend.
**The events have ranged in cost from free admission, to very low cost for patient and family attendees, to quite high prices for all registrants. As the price went up, less patients/families were in attendance unless they were professional family representatives with their organizations supporting the registration fee.
**Several host groups mentioned the meeting sponsors at the open and/or close of each session, thanking them for their financial support that made possible free or lowered meeting fees.
**One meeting of a specific condition, which has a fee-based membership for the organization, required all attendees have their membership fees paid in full before allowing registration to the conference, and then there was a small conference fee for tech overhead costs. Attendance for their virtual meeting was lower than expected.
*Schedule/format - It may be harder for folks to dedicate three or four straight days to a conference from home while also juggling other responsibilities. However, for some it may still be easier to have the meeting in a compact format to help with child care arrangements, etc.
**Depending on the audience your meeting usually draws (from all local to from around the world), you will also need to give consideration to time zones at play.
**Consider building in breaks, especially if you are going to keep it at a limited number of days with longer sessions.
**Consider what can be pre-recorded and shown that way. It minimizes the opportunity for technology glitches and last minute emergencies!
**Record the sessions for viewing later for those whom the date/time doesn't work as well. One group intentionally posted the recordings ASAP to allow those who couldn't watch it live to watch it as close to real-time as they desired.
**Many organization leaders agree that if they return to an in-person format at any point in the future they will have to continue with very intentional engagement with virtual attendees as well.
*Meeting platforms - There are many options to choose from! One group specifically mentioned that Zoom worked well.
*Who runs the meeting? - Some groups have run the virtual conferences themselves with their staff doing it all while others have hired virtual event planners. Virtual event planners do of course come with the additional expense. However, having one allowed some groups' staff to be more engaged in the meeting as participants.
*Live versus pre-recorded sessions - While live sessions may increase the chances of technology glitches or dogs barking in the background being heard, some organizations found that more manageable and cost effective then hiring a group to pre-record the speakers.
*Meeting accessibility
**Medical terminology may be hard for autocaptioning to correctly capture what is being said. YouTube seems to be better than some other platforms. Zoom also offers closed captioning that will learn the words and improve over time.
**Consider paying someone (to do accurate closed captioning or for sign language interpreting). Some have also used students looking for opportunities to practice, such as students at Gallaudet University in Washington, DC.
**Wordly offers an option for on-demand language translation in multiple languages simultaneously - https://wordly.ai/
*Don't forget the time for fun and networking!
**Come up with a way for families to share introductions and pictures.
**Most attendees seem to appreciate some light-heartedness and fun at some point -- I've participated in Bingo, Jeopardy, happy hours, short video tours of the host city, musical presentations, and sing-alongs and shout-outs at various junctures during meetings.
**Just as important have been the times spent on self-care and wellbeing (contemplative ice-breaker questions, mini meditations, yoga sessions, mindfulness moments). And with two organizations with smaller membership and closer relationships, we held memorial times of remembrance for those who had passed away since our last convening.
**Many also express desire for more time to network and connect in conversation, whether through longer Q&As or topic specific break-out groups. Those serendipity moments when one encounters a new acquaintance of similar ilk, or discovers a connection point with a fellow attendee is lacking with virtual meetings. Allowing for an open chat box helps in this regard, as well as allowing for the smaller break out times to give time for quick introductions.
**As well, setting up other avenues for networking by sharing contact information of fellow attendees has been helpful ... with individual registrants given the choice to share contact information, of course.

You'll ultimately have to decide what's right for your audience.

Here are some examples:

--The Family Voices Leadership in Family Professional Partnerships conference was 1 workshop, 2 afternoons a week for 5 weeks. There was no charge as the cost was covered by the cooperative agreement.

--The National Parent Center Capacity Building Conference will be three afternoons (2 slots per afternoon with 6-7 workshops per slot for a total of around 40 workshops) over three consecutive weeks. There is a $50 charge per parent center but then they can register as many people as they want.

--The National Federation of Families for Children's Mental Health conference will be a Tuesday and Thursday afternoon with a plenary session, 15 or so workshops, and a town hall. The cost will be $50/person but $45/person for a group of 10 or more.

--One disease-specific organization is planning to run two back to back weekend days starting at different times to better accommodate their members around the world.

--Another shared the following: "We dialed way back from a five day in-person experience to five virtual sessions on the topics most requested by families. They were each 90 minutes long , both single speakers and panels. We ran them live either morning or evening and then edited them and repeated in the alternate time slot, as we are international and needed to cover Europe and Australia. We chose Wednesdays, 11:00 am and 7:00pm Eastern. We did some polling to get a sense of the logistics."

--Our event is two days. We are charging $25 for members and $50 for non members, $50 for professionals.

We wanted to make it affordable but also wanted to be able to cover or help cover the cost of the tech needs. We are also charging $10 for a optional swag bag of 5p- merchandise including a specially designed mask.

--We made the hours much shorter than our typical two-day conference. The conference was over a weekend concentrated in the middle of the day but was open for a full week so those who could not attend over the weekend, or were in a conflicting time zone. We did not charge. We did not want any barriers to attending in the time of COVID-19 and expected people in a variety of financial situations to register. People joined us from 33 countries. We had funding for the conference from sponsors so this was not a hardship for us as the organizers.

==After the Conference==

*Send thank-you notes to all the volunteers, speakers, contributors, vendors, and other people who participated in the conference. Additional ways to show appreciation to conference speakers includes: giving the speakers a bag or t-shirt with the organization's logo, a plaque, or some other small gift such as gourmet popcorn.
*Send thank-you notes and evaluation forms to the attendees.
*Did you realize in hindsight that you should have done something differently? Write it down!

==Internal Links==

*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

Conferences, Workshops, and Meetings for Affected Individuals

2021-09-06T00:18:32Z

Akrokosky: /* Virtual Conferences */

Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of community. Creating these events involves two major tasks: determining the scope and objectives of your meeting, and doing the logistical planning for the event. You can read some examples of other conferences at our [[Setting Up A National Conference]] page.

==Determining the Scope and Objectives of Your Meeting==

Conferences include many sizes and types of events. They can be as simple as an afternoon session with a speaker followed by some social time, or as extensive as a lodgings-based multiday event with a mix of speakers and activities and with meals served on site. Consider these issues as you plan conferences:

*Your members' interests
*Your goals for serving your membership
*Costs
*Available resources

When creating a new conference, survey your members. Ask them what they want from a conference, how much time they would want to spend, how far they would be willing to travel. Ask them what they can afford, and get a sense of how many interested members would require financial assistance. Even if you know for certain that your members need a certain kind of conference or educational experience, the starting point should be what they want.

This is initial part of planning is where you can ask open-ended questions, such as "what time of year works best for your family?"

Tips for Date Selection

#Spring and fall meetings have good attendance. Families may travel during the summer, so offering the meeting as a vacation may have appeal. Winter storms can hinder travel.
#Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
#Consider holidays as you plan events—not just major holidays but feast days and other observances, depending on your members' affiliations. Holidays (such as Memorial Day, Independence Day, and Labor Day) can mean lower rates for hotels in business cities.
#Know when specialists that focus on your organization's condition go to their professional meetings. You may lose potential speakers if your conference coincides with meetings they must attend.

==Your Members' Interests==

Ask them what they want. This is their conference, and it cannot succeed unless it meets real needs. Some questions to consider: do they want a one-day conference or something longer? Do they want to meet on a weekend or weekday? Are there particular holidays that could coincide with this conference? Are there holiday periods you should avoid? What can they afford?

Answers to these questions will help you get a sense of how many people will actually come to a conference, a crucial starting point for planning location and activities.

==Your Goals for Serving Your Membership==

This is where you reconcile your sense of what your members need with what they want, and where you use what they want to create a curriculum for getting it to them. They may say their top need is to learn how to work for a cure for their children. This could translate into a conference in which they get talks about the current state of research from scientists along with workshops about informed consent and donating tissue.

==Costs and Scholarships==

Travel distances, lodging options, speaker costs, and supplies for the meeting will all figure into your final budget. It takes time to establish the details of this budget, but you'll need to start with a ballpark figure. As you consider what your families want and what your organization needs to share with them, you need to go beyond what families can afford and have a good sense of what your organization's costs will be. Consider name badges, signs for the conference site, packets for the members, registration forms, mailing costs, equipment rental, honoraria or gifts for your speakers, day care, etc.

Many organizations provide financial assistance to some of their members. To learn about some of the scholarship programs offered by other organizations, visit [[Scholarships for your participants/families/members]] and [[Setting Up A National Conference]].

Here is what one health advocate had to say about an organization's experience with conference funding and costs:

"We have had all our expenses covered for the past two conferences through sponsorships and low registration fees ($110 for the first family member, $90 for others; no fee for affected individuals or those under eight-years-old). We have a separate scholarship fund for needy families to attend and ask our donors to make a separate donation if they wish to help a family attend. We usually have enough to pay the registration fees and hotel fees for 2-3 nights for 7-10 families. We do not pay transportation. We go by the honor system. If they say they have a need and fill out the simple application form, then we try to help them. We give preference to first time attending families so if someone asks for a scholarship repeatedly I can simply say others that haven’t yet had a chance to attend have been chosen."

===Honorariums===
As for payment to speakers, groups are all over the place on this. Some pay none - though it is certainly just to compensate people for their time, it is hard to find funding for it. In some cases, groups fundraise for an event just for that expense.

For instance, PXE International, a very small organization (budget of ~$250K), gives an honorarium only when the speaker is critical to a meeting (a low vision specialist or plastic surgeon at a patient info meeting) and they can't find anyone else. They have paid anywhere between $100 to $500 for a workshop of a couple of hours.

Of course, top notch speakers charge a great deal - speaking fees for major speakers are in the tens of thousands and occasionally hundreds of thousands.

==Tips for Budgeting==

#Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
#You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
#Plan on gratuities of about 25% for meals.
#You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
#Don't forget conferences badges, printing and mailing costs, equipment rentals, gifts for speakers, and day care costs.

==Available Resources==

Consider in-kind and financial donations your organization can obtain. Is there a church that can offer space for your meeting? Are there manufacturers whose products your membership uses routinely? As with costs, you'll revisit resources as you do logistical planning, but a general sense of whom you can tap will help you scope your meeting effectively.

==Tips for Getting Funding==

#Exhibitor fees average $1,000.00 per booth.
#Give potential exhibitors about 6 months of lead time.
#If a company can't exhibit, ask for a donation. If you receive corporate sponsorships, make sure to provide them with a tax donation receipt.
#Do your members use specific products regularly, whether over-the-counter supplies or prescription medications? Ask the makers to exhibit or to provide a donation.
#If searching for a photographer or videographer to document your event, you may find success by reaching out to local colleges or universities. Students may provide this service for little or no cost.

==Logistical Planning==

Logistical planning revisits the same issues as setting scope and objectives, and you will also get feedback from your members in this phase, but the questions you ask will come with a range of options, as opposed to be open-ended.

There are several major aspects to planning a conference:

*Site selection
*Date selection
*Budgeting
*Funding
*[[Speaker selection and management]]
*[[Childcare]]
*Managing the timeline
*Photography or videography at the event
*Post-event communication

===Room-sharing and things to think about===

*If guests pay their own way to an event, and the organization has a contract with the hotel, the contract should stipulate that guests are responsible for EVERYTHING related to their stays...fees, damage, etc....and that guests make their own room arrangements. That separation should keep the organization safe from liability for individuals’ behaviors.
*If the organization is covering basic hotel costs (say for presenters), the contract should stipulate that, while the organization is paying for the room at the negotiated rate, guests are responsible for incidentals and any other fees or damage.
*If the organization insists on room sharing, things get murky, because proving culpability between two competing stories becomes a challenge. The organization has imposed the roommate requirement, and thereby puts all guests at risk of having a bad roommate. The person whose credit card secures the “incidental” charges may not be the perpetrator of damage or consumer of minibar treats, but that person is stuck with the bill. (Worse, if the organization uses it’s card to secure all rooms, all guests are completely off the hook. Fortunately, most hotels won’t allow guests to register without swiping a personal credit card.) Meanwhile, if the perpetrator does not cover the costs s/he incurs, the “damaged’ guest will inevitably come to the organization for a resolution. To keep the peace, the organization – the entity demanding room sharing – should probably be prepared to step up and absorb the costs and then (perhaps) pursue the perpetrator for reimbursement...or just suck it up as a cost of doing business.
*In all cases, the organization should disclaim to its guests the terms and conditions of the hotel arrangements that apply to the situation and declare clearly that the organization bears no responsibility for incidentals and damage. These stipulations should be stated as a condition of attendance at the event...very likely in a simple, boilerplate disclaimer in fine print somewhere in the “registration” or “invitation” acceptance materials. In registration materials, the financial transaction adds substance to the disclaimer. In “invitation acceptance” materials, it’s wise to get the guest to somehow acknowledge the disclaimer with a checkbox or initials along with a reminder that the hotel will require a personal credit card at registration to secure the room.

==Creative Welcome Sessions and Introductions==

*We have a New Family Orientation prior to the welcome reception. We connect new families with buddy families prior to this orientation and then they meet there. We go over ins and outs of the conference then. After that all families come to a very easy going and loud welcome reception. We don't do larger introductions there. Families can meet speakers throughout the weekend. They can talk to researchers at meals and poster sessions. Badges are color coded by form of batten and bereaved family badges have angel stickers.

*One we've used is cardboard questions...on one side answer Who I was... On the other Who I am now...

*As you know, ours is not a pediatric disease, so I probably am the last person to provide advice----but this year for the first time we had a woman affected with the language form of our dementia record a 3 min video welcome. She was also present and came up to the dais, but given her impairment a recording was definitely the way to go. It was incredibly moving and powerful, and conveyed a level of respect to the individuals affected that we had not before---given that this is a dementia, we historically have focused on the caregivers/families and spoken “about” the individuals affected. I’m just thinking that there may be some parallels here. For you, I wonder if you can select one boy who can talk about something great he’s accomplished this past year? Would be uplifting and a hopeful model for all?

*We have begun to use very pointed questions that one turns to one’s neighbor and shares about – for 2 minutes each. And then popcorn report out…

*Does anyone watch the Tony awards? They pan onto an actor (male or female) and the person says either " I am an actor because" or I am a producer because or they give their 2 sentence spiel. Or they give their spiel and then say. I'm Xxx and I'm an actor.

*We sometimes do table introductions and sharing instead of full room introductions and sharing. Another idea is to have people stand up if they have children 0-5, 6-13, 14-high school, out of HS, and/or some other characteristics.

*We have a mentor program. Returning families connect with new families prior to conference and at conference. We also set up tables by region so families can meet people in their area. We also have a group meeting for Moms only and Dads only.

*Sometimes to shake things up we do a stand up sit down game with fund and serious topics. But my only warning is whoever manages this needs to have a good command of the room. If not you can lose the room.

*Years ago I heard about one group who gave each family a poster and they were asked to bring photos of their family. They arranged the photos, listed where they were from and added any creative comments (hobbies, pets, jobs, etc.. The photos were on display at the Welcome reception and this helped with families getting to know one another early on. This takes some planning and materials and you probably won't get people to bring photos at this late a date. Smart phones have also taken away our spending time to print photos off.

*Our program director is very witty and funny. We have her moderate the ice breaker session and she makes it really fun with a lot of laughs. It seems to relax our members because they are still quite tense right at the beginning, especially the newcomers. Here’s a quick list of things she’s done:
**Standup/sitdown questions (how many conferences?, etc.)
**Purchased beach balls from the dollar store and wrote questions on each colored wedge in marker. Then broke into smaller groups and tossed the ball to each other and whatever question your right thumb lands nearest, you answer.
**Separate into 12 groups by birth month but let the group figure it out on their own.
**Had a huge circle in alphabetical order by last name
**This year she did “the wave” and it was so, so much fun.

*For our first morning session we create tables of 8 people who I put together carefully with newcomers and old timers and a moderator who does a short welcome and then gives a question to be answered by all at the table and they talk about that for about 15 minutes and then move on to the next question – have about 4 questions in all and it is a nice way for everyone to get to know each other better and make some friends.

*We also play “NBIA Bingo” at the end of this session. We create Bingo cards with questions in each block, like “Who is someone who has a baclofen pump?” and they have to walk around and ask people if they fit the question and if so, that person writes their name in the block. First person to get a full card filled out, wins. We give prizes to top 3 and then say that anyone who fills out their card during the day can turn it in for a NBIA pin so that gets them continuing to ask people questions and talking even after the game is over. Takes about 20 minutes or so depending on your crowd to get a winner, so allow enough time or maybe you could make it one line rather than a full card needed to win.

:I create 8 different versions of the game so each person at each table has different questions so everyone isn’t getting the same people and questions. I include a question for every family so you have to know your group pretty well or if desperate I put “Who is someone from Austin, Texas?” Families can go to their participant list and find the name and then search for that family. Also put questions about the organization like when were we founded, etc. and they can ask others or go to our website where they can find the answers there.

*We do what you have always done, but only have 30 families. I say "tell us where you are from and how many conferences you have attended." Recently, I heard a Podcast where the man introduced each speaker by the answer they had earlier give him to this q: what was the last illegal thing you did? Thought that would be a good change (or some other question).

*For our patient meetings, we use "Share your most embarrassing moment" as the icebreaker at the first dinner. Most people actually share something embarrassing, but for those few who don't feel comfortable, we ask them to share something that people wouldn't know about them. This has been so much fun, and the people who have the best stories are usually the ones you don't expect!

*One thing we did a few years ago that worked well was a spoof on speed dating. Chairs were set up opposite one another. On one side people stayed in their seats and on the other side they moved over a chair every three minutes. We gave them a list of questions they could ask one another if they were shy. It worked so well that it sort of fell apart at the end because everyone was talking to each other. Since that was the point I didn't see it as a bad thing. After a few ice breakers we have also started doing a team building exercise. That has been a hit. Last year our conference theme centered around a cruise ship theme. Attendees were divided into teams and given a bag of odds and ends such as scrap fabric pieces, safety pins, ribbon, feathers etc. They were then told to choose a model in the group and create an outfit to wear on a cruise. The creations were a riot! This year we had a wizard of Oz theme. Teams were given materials to make scarecrows. The challenge was half the team was blindfolded. The team members wearing the blindfolds built the scarecrows. The team members without were not allowed to touch the materials but instead had to give instructions to help the people wearing blindfolds. These have been great to illustrate it takes a team to find a cure. It also gets attendees talking to each other quickly about something fun and not too scary. A bonus was using the scarecrows as decorations at our dinner.

*This year we started a private Facebook group for conference attendees and got the excitement started before the retreat. The last couple of years we made the first night a superhero theme so kids would make crafts while parents mingle (during embassy suites happy hour reception) and the superhero costumes and princesses came to surprise the kids and take pictures. We have assigned seating at dinner (so new families are sitting with seasoned families) and have a slide show with the pics of the kids/families from each table as the microphone is passed for family introductions. . The slide show has cute little superhero graphics added to it.

==Use of Breakout Sessions==

It seems to me that giving a specific task is always good, but only if that task reflects the collective needs of the group. I would recommend that you use one of the following approaches:

:Survey attendees ahead of time to find out what they think are some of the barriers and then schedule focused working groups around those topics. Send out a background document ahead of time detailing the responses to the survey and giving people some information so that they’ll come to the meeting prepared OR plan talks for that morning so that they give people background on those issues.

:Organize the morning presentations as panels with a lot of discussion. Make one of the goals of the morning to identify major barriers. Then have a planning group (a few people from the morning presentations) meet to come up with specific breakout questions. Have those same individuals serve as facilitators for those groups (so that they clearly understand the context of why they were chosen).

:Make the breakouts longer and use the first 30 minutes or so to establish shared challenges. Then have the group pick one shared challenge to focus on. It is important for this type of breakout that you have someone facilitating and someone paying close attention to time, since you have to make a transition from general to specific.

Also, consider using activities to help determine priorities for your community. For instance, I organized one session at the conference (that received very positive feedback) for which I used the following format:

*One, overarching 10 minute presentation to give context
*Short 5 minute presentations (these could be examples of actual research projects that have failed or overall presentations of barriers)
*Break the group into small teams (those sitting around them, 4-5 people max) to come up with solutions in 30 minutes
*One person from each group presents those solutions
*Each individual votes on priorities (this was specific to funding for our session, but could also be used for organizational priorities or something similar).

==Tips for Managing the Timeline==

#Start planning your conference 12 to 14 months before the date.
#Book the site 12 to 14 months in advance.
#Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
#From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
#Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
#Mail registration forms about six to eight weeks before the registration deadline, but prepare to receive the majority of registrations just after the deadline date.
#As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
#Finalize the conference agenda as the registrations are coming in.
#As your registrations are coming in, prepare packets for your attendees.

Careful preparation means more time—and energy—to put out the inevitable last-minute fires!

==Site Selection==

Are your members clustered in one area? How close is your organization's location to the majority of members? What people resources do you have for the nitty-gritty of planning and working with the conference site?

What are your space requirements? You've already decided whether you need a church basement or a hotel; do you need multiple rooms for concurrent sessions? For exhibitors? For socializing?

==Tips for Site Selection==

#The number of people interested is the biggest factor in establishing the scope and location of your meeting.
#Hotel rates should be around $100.00 a night.
#Does the site you are considering have an indoor pool? An area where families can socialize?

For conferences in which your organization is expecting a smaller crowd, there are places the conference could be held that may be less costly than a hotel. One such venue could be faith-based or non-profit related organizations that have conference centers that are available for other organizations to use for a short period of time. [http://www.younglife.org/Camping/Pages/RetreatsAndConferenceUse.aspx Young Life] is an option for this. Furthermore, your organization may want to consider state parks, or university-owned meeting space or property, for example [https://www.bradwoods.org/facilities/meeting-spaces/ Bradford Woods].

==Virtual Conferences==
Virtual conferences have popped up over the last several years for many reasons, including a global health pandemic in 2020. Here are some tips and points to consider from those who have trialed this new format:

*To charge or not to charge - While your organization won't have many of the typical expenses (meeting room rental, food, etc.), there still certainly are costs for the meeting. Many have found that charging at least a nominal fee makes it more likely that participants who commit will actually attend.
**The events have ranged in cost from free admission, to very low cost for patient and family attendees, to quite high prices for all registrants. As the price went up, less patients/families were in attendance unless they were professional family representatives with their organizations supporting the registration fee.
**Several host groups mentioned the meeting sponsors at the open and/or close of each session, thanking them for their financial support that made possible free or lowered meeting fees.
**One meeting of a specific condition, which has a fee-based membership for the organization, required all attendees have their membership fees paid in full before allowing registration to the conference, and then there was a small conference fee for tech overhead costs. Attendance for their virtual meeting was lower than expected.
*Schedule/format - It may be harder for folks to dedicate three or four straight days to a conference from home while also juggling other responsibilities. However, for some it may still be easier to have the meeting in a compact format to help with child care arrangements, etc.
**Depending on the audience your meeting usually draws (from all local to from around the world), you will also need to give consideration to time zones at play.
**Consider building in breaks, especially if you are going to keep it at a limited number of days with longer sessions.
**Consider what can be pre-recorded and shown that way. It minimizes the opportunity for technology glitches and last minute emergencies!
**Record the sessions for viewing later for those whom the date/time doesn't work as well. One group intentionally posted the recordings ASAP to allow those who couldn't watch it live to watch it as close to real-time as they desired.
**Many organization leaders agree that if they return to an in-person format at any point in the future they will have to continue with very intentional engagement with virtual attendees as well.
*Meeting platforms - There are many options to choose from! One group specifically mentioned that Zoom worked well.
*Who runs the meeting? - Some groups have run the virtual conferences themselves with their staff doing it all while others have hired virtual event planners. Virtual event planners do of course come with the additional expense. However, having one allowed some groups' staff to be more engaged in the meeting as participants.
*Live versus pre-recorded sessions - While live sessions may increase the chances of technology glitches or dogs barking in the background being heard, some organizations found that more manageable and cost effective then hiring a group to pre-record the speakers.
*Meeting accessibility
**Medical terminology may be hard for autocaptioning to correctly capture what is being said. YouTube seems to be better than some other platforms. Zoom also offers closed captioning that will learn the words and improve over time.
**Consider paying someone (to do accurate closed captioning or for sign language interpreting). Some have also used students looking for opportunities to practice, such as students at Gallaudet University in Washington, DC.
*Don't forget the time for fun and networking!
**Come up with a way for families to share introductions and pictures.
**Most attendees seem to appreciate some light-heartedness and fun at some point -- I've participated in Bingo, Jeopardy, happy hours, short video tours of the host city, musical presentations, and sing-alongs and shout-outs at various junctures during meetings.
**Just as important have been the times spent on self-care and wellbeing (contemplative ice-breaker questions, mini meditations, yoga sessions, mindfulness moments). And with two organizations with smaller membership and closer relationships, we held memorial times of remembrance for those who had passed away since our last convening.
**Many also express desire for more time to network and connect in conversation, whether through longer Q&As or topic specific break-out groups. Those serendipity moments when one encounters a new acquaintance of similar ilk, or discovers a connection point with a fellow attendee is lacking with virtual meetings. Allowing for an open chat box helps in this regard, as well as allowing for the smaller break out times to give time for quick introductions.
**As well, setting up other avenues for networking by sharing contact information of fellow attendees has been helpful ... with individual registrants given the choice to share contact information, of course.

You'll ultimately have to decide what's right for your audience.

Here are some examples:

--The Family Voices Leadership in Family Professional Partnerships conference was 1 workshop, 2 afternoons a week for 5 weeks. There was no charge as the cost was covered by the cooperative agreement.

--The National Parent Center Capacity Building Conference will be three afternoons (2 slots per afternoon with 6-7 workshops per slot for a total of around 40 workshops) over three consecutive weeks. There is a $50 charge per parent center but then they can register as many people as they want.

--The National Federation of Families for Children's Mental Health conference will be a Tuesday and Thursday afternoon with a plenary session, 15 or so workshops, and a town hall. The cost will be $50/person but $45/person for a group of 10 or more.

--One disease-specific organization is planning to run two back to back weekend days starting at different times to better accommodate their members around the world.

--Another shared the following: "We dialed way back from a five day in-person experience to five virtual sessions on the topics most requested by families. They were each 90 minutes long , both single speakers and panels. We ran them live either morning or evening and then edited them and repeated in the alternate time slot, as we are international and needed to cover Europe and Australia. We chose Wednesdays, 11:00 am and 7:00pm Eastern. We did some polling to get a sense of the logistics."

--Our event is two days. We are charging $25 for members and $50 for non members, $50 for professionals.

We wanted to make it affordable but also wanted to be able to cover or help cover the cost of the tech needs. We are also charging $10 for a optional swag bag of 5p- merchandise including a specially designed mask.

--We made the hours much shorter than our typical two-day conference. The conference was over a weekend concentrated in the middle of the day but was open for a full week so those who could not attend over the weekend, or were in a conflicting time zone. We did not charge. We did not want any barriers to attending in the time of COVID-19 and expected people in a variety of financial situations to register. People joined us from 33 countries. We had funding for the conference from sponsors so this was not a hardship for us as the organizers.

==After the Conference==

*Send thank-you notes to all the volunteers, speakers, contributors, vendors, and other people who participated in the conference. Additional ways to show appreciation to conference speakers includes: giving the speakers a bag or t-shirt with the organization's logo, a plaque, or some other small gift such as gourmet popcorn.
*Send thank-you notes and evaluation forms to the attendees.
*Did you realize in hindsight that you should have done something differently? Write it down!

==Internal Links==

*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

Conferences, Workshops, and Meetings for Affected Individuals

2021-08-15T19:51:03Z

Akrokosky: /* Virtual Conferences */

Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of community. Creating these events involves two major tasks: determining the scope and objectives of your meeting, and doing the logistical planning for the event. You can read some examples of other conferences at our [[Setting Up A National Conference]] page.

==Determining the Scope and Objectives of Your Meeting==

Conferences include many sizes and types of events. They can be as simple as an afternoon session with a speaker followed by some social time, or as extensive as a lodgings-based multiday event with a mix of speakers and activities and with meals served on site. Consider these issues as you plan conferences:

*Your members' interests
*Your goals for serving your membership
*Costs
*Available resources

When creating a new conference, survey your members. Ask them what they want from a conference, how much time they would want to spend, how far they would be willing to travel. Ask them what they can afford, and get a sense of how many interested members would require financial assistance. Even if you know for certain that your members need a certain kind of conference or educational experience, the starting point should be what they want.

This is initial part of planning is where you can ask open-ended questions, such as "what time of year works best for your family?"

Tips for Date Selection

#Spring and fall meetings have good attendance. Families may travel during the summer, so offering the meeting as a vacation may have appeal. Winter storms can hinder travel.
#Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
#Consider holidays as you plan events—not just major holidays but feast days and other observances, depending on your members' affiliations. Holidays (such as Memorial Day, Independence Day, and Labor Day) can mean lower rates for hotels in business cities.
#Know when specialists that focus on your organization's condition go to their professional meetings. You may lose potential speakers if your conference coincides with meetings they must attend.

==Your Members' Interests==

Ask them what they want. This is their conference, and it cannot succeed unless it meets real needs. Some questions to consider: do they want a one-day conference or something longer? Do they want to meet on a weekend or weekday? Are there particular holidays that could coincide with this conference? Are there holiday periods you should avoid? What can they afford?

Answers to these questions will help you get a sense of how many people will actually come to a conference, a crucial starting point for planning location and activities.

==Your Goals for Serving Your Membership==

This is where you reconcile your sense of what your members need with what they want, and where you use what they want to create a curriculum for getting it to them. They may say their top need is to learn how to work for a cure for their children. This could translate into a conference in which they get talks about the current state of research from scientists along with workshops about informed consent and donating tissue.

==Costs and Scholarships==

Travel distances, lodging options, speaker costs, and supplies for the meeting will all figure into your final budget. It takes time to establish the details of this budget, but you'll need to start with a ballpark figure. As you consider what your families want and what your organization needs to share with them, you need to go beyond what families can afford and have a good sense of what your organization's costs will be. Consider name badges, signs for the conference site, packets for the members, registration forms, mailing costs, equipment rental, honoraria or gifts for your speakers, day care, etc.

Many organizations provide financial assistance to some of their members. To learn about some of the scholarship programs offered by other organizations, visit [[Scholarships for your participants/families/members]] and [[Setting Up A National Conference]].

Here is what one health advocate had to say about an organization's experience with conference funding and costs:

"We have had all our expenses covered for the past two conferences through sponsorships and low registration fees ($110 for the first family member, $90 for others; no fee for affected individuals or those under eight-years-old). We have a separate scholarship fund for needy families to attend and ask our donors to make a separate donation if they wish to help a family attend. We usually have enough to pay the registration fees and hotel fees for 2-3 nights for 7-10 families. We do not pay transportation. We go by the honor system. If they say they have a need and fill out the simple application form, then we try to help them. We give preference to first time attending families so if someone asks for a scholarship repeatedly I can simply say others that haven’t yet had a chance to attend have been chosen."

===Honorariums===
As for payment to speakers, groups are all over the place on this. Some pay none - though it is certainly just to compensate people for their time, it is hard to find funding for it. In some cases, groups fundraise for an event just for that expense.

For instance, PXE International, a very small organization (budget of ~$250K), gives an honorarium only when the speaker is critical to a meeting (a low vision specialist or plastic surgeon at a patient info meeting) and they can't find anyone else. They have paid anywhere between $100 to $500 for a workshop of a couple of hours.

Of course, top notch speakers charge a great deal - speaking fees for major speakers are in the tens of thousands and occasionally hundreds of thousands.

==Tips for Budgeting==

#Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
#You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
#Plan on gratuities of about 25% for meals.
#You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
#Don't forget conferences badges, printing and mailing costs, equipment rentals, gifts for speakers, and day care costs.

==Available Resources==

Consider in-kind and financial donations your organization can obtain. Is there a church that can offer space for your meeting? Are there manufacturers whose products your membership uses routinely? As with costs, you'll revisit resources as you do logistical planning, but a general sense of whom you can tap will help you scope your meeting effectively.

==Tips for Getting Funding==

#Exhibitor fees average $1,000.00 per booth.
#Give potential exhibitors about 6 months of lead time.
#If a company can't exhibit, ask for a donation. If you receive corporate sponsorships, make sure to provide them with a tax donation receipt.
#Do your members use specific products regularly, whether over-the-counter supplies or prescription medications? Ask the makers to exhibit or to provide a donation.
#If searching for a photographer or videographer to document your event, you may find success by reaching out to local colleges or universities. Students may provide this service for little or no cost.

==Logistical Planning==

Logistical planning revisits the same issues as setting scope and objectives, and you will also get feedback from your members in this phase, but the questions you ask will come with a range of options, as opposed to be open-ended.

There are several major aspects to planning a conference:

*Site selection
*Date selection
*Budgeting
*Funding
*[[Speaker selection and management]]
*[[Childcare]]
*Managing the timeline
*Photography or videography at the event
*Post-event communication

===Room-sharing and things to think about===

*If guests pay their own way to an event, and the organization has a contract with the hotel, the contract should stipulate that guests are responsible for EVERYTHING related to their stays...fees, damage, etc....and that guests make their own room arrangements. That separation should keep the organization safe from liability for individuals’ behaviors.
*If the organization is covering basic hotel costs (say for presenters), the contract should stipulate that, while the organization is paying for the room at the negotiated rate, guests are responsible for incidentals and any other fees or damage.
*If the organization insists on room sharing, things get murky, because proving culpability between two competing stories becomes a challenge. The organization has imposed the roommate requirement, and thereby puts all guests at risk of having a bad roommate. The person whose credit card secures the “incidental” charges may not be the perpetrator of damage or consumer of minibar treats, but that person is stuck with the bill. (Worse, if the organization uses it’s card to secure all rooms, all guests are completely off the hook. Fortunately, most hotels won’t allow guests to register without swiping a personal credit card.) Meanwhile, if the perpetrator does not cover the costs s/he incurs, the “damaged’ guest will inevitably come to the organization for a resolution. To keep the peace, the organization – the entity demanding room sharing – should probably be prepared to step up and absorb the costs and then (perhaps) pursue the perpetrator for reimbursement...or just suck it up as a cost of doing business.
*In all cases, the organization should disclaim to its guests the terms and conditions of the hotel arrangements that apply to the situation and declare clearly that the organization bears no responsibility for incidentals and damage. These stipulations should be stated as a condition of attendance at the event...very likely in a simple, boilerplate disclaimer in fine print somewhere in the “registration” or “invitation” acceptance materials. In registration materials, the financial transaction adds substance to the disclaimer. In “invitation acceptance” materials, it’s wise to get the guest to somehow acknowledge the disclaimer with a checkbox or initials along with a reminder that the hotel will require a personal credit card at registration to secure the room.

==Creative Welcome Sessions and Introductions==

*We have a New Family Orientation prior to the welcome reception. We connect new families with buddy families prior to this orientation and then they meet there. We go over ins and outs of the conference then. After that all families come to a very easy going and loud welcome reception. We don't do larger introductions there. Families can meet speakers throughout the weekend. They can talk to researchers at meals and poster sessions. Badges are color coded by form of batten and bereaved family badges have angel stickers.

*One we've used is cardboard questions...on one side answer Who I was... On the other Who I am now...

*As you know, ours is not a pediatric disease, so I probably am the last person to provide advice----but this year for the first time we had a woman affected with the language form of our dementia record a 3 min video welcome. She was also present and came up to the dais, but given her impairment a recording was definitely the way to go. It was incredibly moving and powerful, and conveyed a level of respect to the individuals affected that we had not before---given that this is a dementia, we historically have focused on the caregivers/families and spoken “about” the individuals affected. I’m just thinking that there may be some parallels here. For you, I wonder if you can select one boy who can talk about something great he’s accomplished this past year? Would be uplifting and a hopeful model for all?

*We have begun to use very pointed questions that one turns to one’s neighbor and shares about – for 2 minutes each. And then popcorn report out…

*Does anyone watch the Tony awards? They pan onto an actor (male or female) and the person says either " I am an actor because" or I am a producer because or they give their 2 sentence spiel. Or they give their spiel and then say. I'm Xxx and I'm an actor.

*We sometimes do table introductions and sharing instead of full room introductions and sharing. Another idea is to have people stand up if they have children 0-5, 6-13, 14-high school, out of HS, and/or some other characteristics.

*We have a mentor program. Returning families connect with new families prior to conference and at conference. We also set up tables by region so families can meet people in their area. We also have a group meeting for Moms only and Dads only.

*Sometimes to shake things up we do a stand up sit down game with fund and serious topics. But my only warning is whoever manages this needs to have a good command of the room. If not you can lose the room.

*Years ago I heard about one group who gave each family a poster and they were asked to bring photos of their family. They arranged the photos, listed where they were from and added any creative comments (hobbies, pets, jobs, etc.. The photos were on display at the Welcome reception and this helped with families getting to know one another early on. This takes some planning and materials and you probably won't get people to bring photos at this late a date. Smart phones have also taken away our spending time to print photos off.

*Our program director is very witty and funny. We have her moderate the ice breaker session and she makes it really fun with a lot of laughs. It seems to relax our members because they are still quite tense right at the beginning, especially the newcomers. Here’s a quick list of things she’s done:
**Standup/sitdown questions (how many conferences?, etc.)
**Purchased beach balls from the dollar store and wrote questions on each colored wedge in marker. Then broke into smaller groups and tossed the ball to each other and whatever question your right thumb lands nearest, you answer.
**Separate into 12 groups by birth month but let the group figure it out on their own.
**Had a huge circle in alphabetical order by last name
**This year she did “the wave” and it was so, so much fun.

*For our first morning session we create tables of 8 people who I put together carefully with newcomers and old timers and a moderator who does a short welcome and then gives a question to be answered by all at the table and they talk about that for about 15 minutes and then move on to the next question – have about 4 questions in all and it is a nice way for everyone to get to know each other better and make some friends.

*We also play “NBIA Bingo” at the end of this session. We create Bingo cards with questions in each block, like “Who is someone who has a baclofen pump?” and they have to walk around and ask people if they fit the question and if so, that person writes their name in the block. First person to get a full card filled out, wins. We give prizes to top 3 and then say that anyone who fills out their card during the day can turn it in for a NBIA pin so that gets them continuing to ask people questions and talking even after the game is over. Takes about 20 minutes or so depending on your crowd to get a winner, so allow enough time or maybe you could make it one line rather than a full card needed to win.

:I create 8 different versions of the game so each person at each table has different questions so everyone isn’t getting the same people and questions. I include a question for every family so you have to know your group pretty well or if desperate I put “Who is someone from Austin, Texas?” Families can go to their participant list and find the name and then search for that family. Also put questions about the organization like when were we founded, etc. and they can ask others or go to our website where they can find the answers there.

*We do what you have always done, but only have 30 families. I say "tell us where you are from and how many conferences you have attended." Recently, I heard a Podcast where the man introduced each speaker by the answer they had earlier give him to this q: what was the last illegal thing you did? Thought that would be a good change (or some other question).

*For our patient meetings, we use "Share your most embarrassing moment" as the icebreaker at the first dinner. Most people actually share something embarrassing, but for those few who don't feel comfortable, we ask them to share something that people wouldn't know about them. This has been so much fun, and the people who have the best stories are usually the ones you don't expect!

*One thing we did a few years ago that worked well was a spoof on speed dating. Chairs were set up opposite one another. On one side people stayed in their seats and on the other side they moved over a chair every three minutes. We gave them a list of questions they could ask one another if they were shy. It worked so well that it sort of fell apart at the end because everyone was talking to each other. Since that was the point I didn't see it as a bad thing. After a few ice breakers we have also started doing a team building exercise. That has been a hit. Last year our conference theme centered around a cruise ship theme. Attendees were divided into teams and given a bag of odds and ends such as scrap fabric pieces, safety pins, ribbon, feathers etc. They were then told to choose a model in the group and create an outfit to wear on a cruise. The creations were a riot! This year we had a wizard of Oz theme. Teams were given materials to make scarecrows. The challenge was half the team was blindfolded. The team members wearing the blindfolds built the scarecrows. The team members without were not allowed to touch the materials but instead had to give instructions to help the people wearing blindfolds. These have been great to illustrate it takes a team to find a cure. It also gets attendees talking to each other quickly about something fun and not too scary. A bonus was using the scarecrows as decorations at our dinner.

*This year we started a private Facebook group for conference attendees and got the excitement started before the retreat. The last couple of years we made the first night a superhero theme so kids would make crafts while parents mingle (during embassy suites happy hour reception) and the superhero costumes and princesses came to surprise the kids and take pictures. We have assigned seating at dinner (so new families are sitting with seasoned families) and have a slide show with the pics of the kids/families from each table as the microphone is passed for family introductions. . The slide show has cute little superhero graphics added to it.

==Use of Breakout Sessions==

It seems to me that giving a specific task is always good, but only if that task reflects the collective needs of the group. I would recommend that you use one of the following approaches:

:Survey attendees ahead of time to find out what they think are some of the barriers and then schedule focused working groups around those topics. Send out a background document ahead of time detailing the responses to the survey and giving people some information so that they’ll come to the meeting prepared OR plan talks for that morning so that they give people background on those issues.

:Organize the morning presentations as panels with a lot of discussion. Make one of the goals of the morning to identify major barriers. Then have a planning group (a few people from the morning presentations) meet to come up with specific breakout questions. Have those same individuals serve as facilitators for those groups (so that they clearly understand the context of why they were chosen).

:Make the breakouts longer and use the first 30 minutes or so to establish shared challenges. Then have the group pick one shared challenge to focus on. It is important for this type of breakout that you have someone facilitating and someone paying close attention to time, since you have to make a transition from general to specific.

Also, consider using activities to help determine priorities for your community. For instance, I organized one session at the conference (that received very positive feedback) for which I used the following format:

*One, overarching 10 minute presentation to give context
*Short 5 minute presentations (these could be examples of actual research projects that have failed or overall presentations of barriers)
*Break the group into small teams (those sitting around them, 4-5 people max) to come up with solutions in 30 minutes
*One person from each group presents those solutions
*Each individual votes on priorities (this was specific to funding for our session, but could also be used for organizational priorities or something similar).

==Tips for Managing the Timeline==

#Start planning your conference 12 to 14 months before the date.
#Book the site 12 to 14 months in advance.
#Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
#From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
#Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
#Mail registration forms about six to eight weeks before the registration deadline, but prepare to receive the majority of registrations just after the deadline date.
#As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
#Finalize the conference agenda as the registrations are coming in.
#As your registrations are coming in, prepare packets for your attendees.

Careful preparation means more time—and energy—to put out the inevitable last-minute fires!

==Site Selection==

Are your members clustered in one area? How close is your organization's location to the majority of members? What people resources do you have for the nitty-gritty of planning and working with the conference site?

What are your space requirements? You've already decided whether you need a church basement or a hotel; do you need multiple rooms for concurrent sessions? For exhibitors? For socializing?

==Tips for Site Selection==

#The number of people interested is the biggest factor in establishing the scope and location of your meeting.
#Hotel rates should be around $100.00 a night.
#Does the site you are considering have an indoor pool? An area where families can socialize?

For conferences in which your organization is expecting a smaller crowd, there are places the conference could be held that may be less costly than a hotel. One such venue could be faith-based or non-profit related organizations that have conference centers that are available for other organizations to use for a short period of time. [http://www.younglife.org/Camping/Pages/RetreatsAndConferenceUse.aspx Young Life] is an option for this. Furthermore, your organization may want to consider state parks, or university-owned meeting space or property, for example [https://www.bradwoods.org/facilities/meeting-spaces/ Bradford Woods].

==Virtual Conferences==
Virtual conferences have popped up over the last several years for many reasons, including a global health pandemic in 2020. Here are some tips and points to consider from those who have trialed this new format:

*To charge or not to charge - While your organization won't have many of the typical expenses (meeting room rental, food, etc.), there still certainly are costs for the meeting. Many have found that charging at least a nominal fee makes it more likely that participants who commit will actually attend.
**The events have ranged in cost from free admission, to very low cost for patient and family attendees, to quite high prices for all registrants. As the price went up, less patients/families were in attendance unless they were professional family representatives with their organizations supporting the registration fee.
**Several host groups mentioned the meeting sponsors at the open and/or close of each session, thanking them for their financial support that made possible free or lowered meeting fees.
**One meeting of a specific condition, which has a fee-based membership for the organization, required all attendees have their membership fees paid in full before allowing registration to the conference, and then there was a small conference fee for tech overhead costs. Attendance for their virtual meeting was lower than expected.
*Schedule/format - It may be harder for folks to dedicate three or four straight days to a conference from home while also juggling other responsibilities. However, for some it may still be easier to have the meeting in a compact format to help with child care arrangements, etc.
**Depending on the audience your meeting usually draws (from all local to from around the world), you will also need to give consideration to time zones at play.
**Consider building in breaks, especially if you are going to keep it at a limited number of days with longer sessions.
**Consider what can be pre-recorded and shown that way. It minimizes the opportunity for technology glitches and last minute emergencies!
**Record the sessions for viewing later for those whom the date/time doesn't work as well. One group intentionally posted the recordings ASAP to allow those who couldn't watch it live to watch it as close to real-time as they desired.
**Many organization leaders agree that if they return to an in-person format at any point in the future they will have to continue with very intentional engagement with virtual attendees as well.
*Meeting platforms - There are many options to choose from! One group specifically mentioned that Zoom worked well.
*Who runs the meeting? - Some groups have run the virtual conferences themselves with their staff doing it all while others have hired virtual event planners. Virtual event planners do of course come with the additional expense. However, having one allowed some groups' staff to be more engaged in the meeting as participants.
*Don't forget the time for fun and networking!
**Come up with a way for families to share introductions and pictures.
**Most attendees seem to appreciate some light-heartedness and fun at some point -- I've participated in Bingo, Jeopardy, happy hours, short video tours of the host city, musical presentations, and sing-alongs and shout-outs at various junctures during meetings.
**Just as important have been the times spent on self-care and wellbeing (contemplative ice-breaker questions, mini meditations, yoga sessions, mindfulness moments). And with two organizations with smaller membership and closer relationships, we held memorial times of remembrance for those who had passed away since our last convening.
**Many also express desire for more time to network and connect in conversation, whether through longer Q&As or topic specific break-out groups. Those serendipity moments when one encounters a new acquaintance of similar ilk, or discovers a connection point with a fellow attendee is lacking with virtual meetings. Allowing for an open chat box helps in this regard, as well as allowing for the smaller break out times to give time for quick introductions.
**As well, setting up other avenues for networking by sharing contact information of fellow attendees has been helpful ... with individual registrants given the choice to share contact information, of course.

You'll ultimately have to decide what's right for your audience.

Here are some examples:

--The Family Voices Leadership in Family Professional Partnerships conference was 1 workshop, 2 afternoons a week for 5 weeks. There was no charge as the cost was covered by the cooperative agreement.

--The National Parent Center Capacity Building Conference will be three afternoons (2 slots per afternoon with 6-7 workshops per slot for a total of around 40 workshops) over three consecutive weeks. There is a $50 charge per parent center but then they can register as many people as they want.

--The National Federation of Families for Children's Mental Health conference will be a Tuesday and Thursday afternoon with a plenary session, 15 or so workshops, and a town hall. The cost will be $50/person but $45/person for a group of 10 or more.

--One disease-specific organization is planning to run two back to back weekend days starting at different times to better accommodate their members around the world.

--Another shared the following: "We dialed way back from a five day in-person experience to five virtual sessions on the topics most requested by families. They were each 90 minutes long , both single speakers and panels. We ran them live either morning or evening and then edited them and repeated in the alternate time slot, as we are international and needed to cover Europe and Australia. We chose Wednesdays, 11:00 am and 7:00pm Eastern. We did some polling to get a sense of the logistics."

--Our event is two days. We are charging $25 for members and $50 for non members, $50 for professionals.

We wanted to make it affordable but also wanted to be able to cover or help cover the cost of the tech needs. We are also charging $10 for a optional swag bag of 5p- merchandise including a specially designed mask.

--We made the hours much shorter than our typical two-day conference. The conference was over a weekend concentrated in the middle of the day but was open for a full week so those who could not attend over the weekend, or were in a conflicting time zone. We did not charge. We did not want any barriers to attending in the time of COVID-19 and expected people in a variety of financial situations to register. People joined us from 33 countries. We had funding for the conference from sponsors so this was not a hardship for us as the organizers.

==After the Conference==

*Send thank-you notes to all the volunteers, speakers, contributors, vendors, and other people who participated in the conference. Additional ways to show appreciation to conference speakers includes: giving the speakers a bag or t-shirt with the organization's logo, a plaque, or some other small gift such as gourmet popcorn.
*Send thank-you notes and evaluation forms to the attendees.
*Did you realize in hindsight that you should have done something differently? Write it down!

==Internal Links==

*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

Conferences, Workshops, and Meetings for Affected Individuals

2021-08-15T19:30:08Z

Akrokosky: /* Virtual Conferences */

Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of community. Creating these events involves two major tasks: determining the scope and objectives of your meeting, and doing the logistical planning for the event. You can read some examples of other conferences at our [[Setting Up A National Conference]] page.

==Determining the Scope and Objectives of Your Meeting==

Conferences include many sizes and types of events. They can be as simple as an afternoon session with a speaker followed by some social time, or as extensive as a lodgings-based multiday event with a mix of speakers and activities and with meals served on site. Consider these issues as you plan conferences:

*Your members' interests
*Your goals for serving your membership
*Costs
*Available resources

When creating a new conference, survey your members. Ask them what they want from a conference, how much time they would want to spend, how far they would be willing to travel. Ask them what they can afford, and get a sense of how many interested members would require financial assistance. Even if you know for certain that your members need a certain kind of conference or educational experience, the starting point should be what they want.

This is initial part of planning is where you can ask open-ended questions, such as "what time of year works best for your family?"

Tips for Date Selection

#Spring and fall meetings have good attendance. Families may travel during the summer, so offering the meeting as a vacation may have appeal. Winter storms can hinder travel.
#Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
#Consider holidays as you plan events—not just major holidays but feast days and other observances, depending on your members' affiliations. Holidays (such as Memorial Day, Independence Day, and Labor Day) can mean lower rates for hotels in business cities.
#Know when specialists that focus on your organization's condition go to their professional meetings. You may lose potential speakers if your conference coincides with meetings they must attend.

==Your Members' Interests==

Ask them what they want. This is their conference, and it cannot succeed unless it meets real needs. Some questions to consider: do they want a one-day conference or something longer? Do they want to meet on a weekend or weekday? Are there particular holidays that could coincide with this conference? Are there holiday periods you should avoid? What can they afford?

Answers to these questions will help you get a sense of how many people will actually come to a conference, a crucial starting point for planning location and activities.

==Your Goals for Serving Your Membership==

This is where you reconcile your sense of what your members need with what they want, and where you use what they want to create a curriculum for getting it to them. They may say their top need is to learn how to work for a cure for their children. This could translate into a conference in which they get talks about the current state of research from scientists along with workshops about informed consent and donating tissue.

==Costs and Scholarships==

Travel distances, lodging options, speaker costs, and supplies for the meeting will all figure into your final budget. It takes time to establish the details of this budget, but you'll need to start with a ballpark figure. As you consider what your families want and what your organization needs to share with them, you need to go beyond what families can afford and have a good sense of what your organization's costs will be. Consider name badges, signs for the conference site, packets for the members, registration forms, mailing costs, equipment rental, honoraria or gifts for your speakers, day care, etc.

Many organizations provide financial assistance to some of their members. To learn about some of the scholarship programs offered by other organizations, visit [[Scholarships for your participants/families/members]] and [[Setting Up A National Conference]].

Here is what one health advocate had to say about an organization's experience with conference funding and costs:

"We have had all our expenses covered for the past two conferences through sponsorships and low registration fees ($110 for the first family member, $90 for others; no fee for affected individuals or those under eight-years-old). We have a separate scholarship fund for needy families to attend and ask our donors to make a separate donation if they wish to help a family attend. We usually have enough to pay the registration fees and hotel fees for 2-3 nights for 7-10 families. We do not pay transportation. We go by the honor system. If they say they have a need and fill out the simple application form, then we try to help them. We give preference to first time attending families so if someone asks for a scholarship repeatedly I can simply say others that haven’t yet had a chance to attend have been chosen."

===Honorariums===
As for payment to speakers, groups are all over the place on this. Some pay none - though it is certainly just to compensate people for their time, it is hard to find funding for it. In some cases, groups fundraise for an event just for that expense.

For instance, PXE International, a very small organization (budget of ~$250K), gives an honorarium only when the speaker is critical to a meeting (a low vision specialist or plastic surgeon at a patient info meeting) and they can't find anyone else. They have paid anywhere between $100 to $500 for a workshop of a couple of hours.

Of course, top notch speakers charge a great deal - speaking fees for major speakers are in the tens of thousands and occasionally hundreds of thousands.

==Tips for Budgeting==

#Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
#You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
#Plan on gratuities of about 25% for meals.
#You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
#Don't forget conferences badges, printing and mailing costs, equipment rentals, gifts for speakers, and day care costs.

==Available Resources==

Consider in-kind and financial donations your organization can obtain. Is there a church that can offer space for your meeting? Are there manufacturers whose products your membership uses routinely? As with costs, you'll revisit resources as you do logistical planning, but a general sense of whom you can tap will help you scope your meeting effectively.

==Tips for Getting Funding==

#Exhibitor fees average $1,000.00 per booth.
#Give potential exhibitors about 6 months of lead time.
#If a company can't exhibit, ask for a donation. If you receive corporate sponsorships, make sure to provide them with a tax donation receipt.
#Do your members use specific products regularly, whether over-the-counter supplies or prescription medications? Ask the makers to exhibit or to provide a donation.
#If searching for a photographer or videographer to document your event, you may find success by reaching out to local colleges or universities. Students may provide this service for little or no cost.

==Logistical Planning==

Logistical planning revisits the same issues as setting scope and objectives, and you will also get feedback from your members in this phase, but the questions you ask will come with a range of options, as opposed to be open-ended.

There are several major aspects to planning a conference:

*Site selection
*Date selection
*Budgeting
*Funding
*[[Speaker selection and management]]
*[[Childcare]]
*Managing the timeline
*Photography or videography at the event
*Post-event communication

===Room-sharing and things to think about===

*If guests pay their own way to an event, and the organization has a contract with the hotel, the contract should stipulate that guests are responsible for EVERYTHING related to their stays...fees, damage, etc....and that guests make their own room arrangements. That separation should keep the organization safe from liability for individuals’ behaviors.
*If the organization is covering basic hotel costs (say for presenters), the contract should stipulate that, while the organization is paying for the room at the negotiated rate, guests are responsible for incidentals and any other fees or damage.
*If the organization insists on room sharing, things get murky, because proving culpability between two competing stories becomes a challenge. The organization has imposed the roommate requirement, and thereby puts all guests at risk of having a bad roommate. The person whose credit card secures the “incidental” charges may not be the perpetrator of damage or consumer of minibar treats, but that person is stuck with the bill. (Worse, if the organization uses it’s card to secure all rooms, all guests are completely off the hook. Fortunately, most hotels won’t allow guests to register without swiping a personal credit card.) Meanwhile, if the perpetrator does not cover the costs s/he incurs, the “damaged’ guest will inevitably come to the organization for a resolution. To keep the peace, the organization – the entity demanding room sharing – should probably be prepared to step up and absorb the costs and then (perhaps) pursue the perpetrator for reimbursement...or just suck it up as a cost of doing business.
*In all cases, the organization should disclaim to its guests the terms and conditions of the hotel arrangements that apply to the situation and declare clearly that the organization bears no responsibility for incidentals and damage. These stipulations should be stated as a condition of attendance at the event...very likely in a simple, boilerplate disclaimer in fine print somewhere in the “registration” or “invitation” acceptance materials. In registration materials, the financial transaction adds substance to the disclaimer. In “invitation acceptance” materials, it’s wise to get the guest to somehow acknowledge the disclaimer with a checkbox or initials along with a reminder that the hotel will require a personal credit card at registration to secure the room.

==Creative Welcome Sessions and Introductions==

*We have a New Family Orientation prior to the welcome reception. We connect new families with buddy families prior to this orientation and then they meet there. We go over ins and outs of the conference then. After that all families come to a very easy going and loud welcome reception. We don't do larger introductions there. Families can meet speakers throughout the weekend. They can talk to researchers at meals and poster sessions. Badges are color coded by form of batten and bereaved family badges have angel stickers.

*One we've used is cardboard questions...on one side answer Who I was... On the other Who I am now...

*As you know, ours is not a pediatric disease, so I probably am the last person to provide advice----but this year for the first time we had a woman affected with the language form of our dementia record a 3 min video welcome. She was also present and came up to the dais, but given her impairment a recording was definitely the way to go. It was incredibly moving and powerful, and conveyed a level of respect to the individuals affected that we had not before---given that this is a dementia, we historically have focused on the caregivers/families and spoken “about” the individuals affected. I’m just thinking that there may be some parallels here. For you, I wonder if you can select one boy who can talk about something great he’s accomplished this past year? Would be uplifting and a hopeful model for all?

*We have begun to use very pointed questions that one turns to one’s neighbor and shares about – for 2 minutes each. And then popcorn report out…

*Does anyone watch the Tony awards? They pan onto an actor (male or female) and the person says either " I am an actor because" or I am a producer because or they give their 2 sentence spiel. Or they give their spiel and then say. I'm Xxx and I'm an actor.

*We sometimes do table introductions and sharing instead of full room introductions and sharing. Another idea is to have people stand up if they have children 0-5, 6-13, 14-high school, out of HS, and/or some other characteristics.

*We have a mentor program. Returning families connect with new families prior to conference and at conference. We also set up tables by region so families can meet people in their area. We also have a group meeting for Moms only and Dads only.

*Sometimes to shake things up we do a stand up sit down game with fund and serious topics. But my only warning is whoever manages this needs to have a good command of the room. If not you can lose the room.

*Years ago I heard about one group who gave each family a poster and they were asked to bring photos of their family. They arranged the photos, listed where they were from and added any creative comments (hobbies, pets, jobs, etc.. The photos were on display at the Welcome reception and this helped with families getting to know one another early on. This takes some planning and materials and you probably won't get people to bring photos at this late a date. Smart phones have also taken away our spending time to print photos off.

*Our program director is very witty and funny. We have her moderate the ice breaker session and she makes it really fun with a lot of laughs. It seems to relax our members because they are still quite tense right at the beginning, especially the newcomers. Here’s a quick list of things she’s done:
**Standup/sitdown questions (how many conferences?, etc.)
**Purchased beach balls from the dollar store and wrote questions on each colored wedge in marker. Then broke into smaller groups and tossed the ball to each other and whatever question your right thumb lands nearest, you answer.
**Separate into 12 groups by birth month but let the group figure it out on their own.
**Had a huge circle in alphabetical order by last name
**This year she did “the wave” and it was so, so much fun.

*For our first morning session we create tables of 8 people who I put together carefully with newcomers and old timers and a moderator who does a short welcome and then gives a question to be answered by all at the table and they talk about that for about 15 minutes and then move on to the next question – have about 4 questions in all and it is a nice way for everyone to get to know each other better and make some friends.

*We also play “NBIA Bingo” at the end of this session. We create Bingo cards with questions in each block, like “Who is someone who has a baclofen pump?” and they have to walk around and ask people if they fit the question and if so, that person writes their name in the block. First person to get a full card filled out, wins. We give prizes to top 3 and then say that anyone who fills out their card during the day can turn it in for a NBIA pin so that gets them continuing to ask people questions and talking even after the game is over. Takes about 20 minutes or so depending on your crowd to get a winner, so allow enough time or maybe you could make it one line rather than a full card needed to win.

:I create 8 different versions of the game so each person at each table has different questions so everyone isn’t getting the same people and questions. I include a question for every family so you have to know your group pretty well or if desperate I put “Who is someone from Austin, Texas?” Families can go to their participant list and find the name and then search for that family. Also put questions about the organization like when were we founded, etc. and they can ask others or go to our website where they can find the answers there.

*We do what you have always done, but only have 30 families. I say "tell us where you are from and how many conferences you have attended." Recently, I heard a Podcast where the man introduced each speaker by the answer they had earlier give him to this q: what was the last illegal thing you did? Thought that would be a good change (or some other question).

*For our patient meetings, we use "Share your most embarrassing moment" as the icebreaker at the first dinner. Most people actually share something embarrassing, but for those few who don't feel comfortable, we ask them to share something that people wouldn't know about them. This has been so much fun, and the people who have the best stories are usually the ones you don't expect!

*One thing we did a few years ago that worked well was a spoof on speed dating. Chairs were set up opposite one another. On one side people stayed in their seats and on the other side they moved over a chair every three minutes. We gave them a list of questions they could ask one another if they were shy. It worked so well that it sort of fell apart at the end because everyone was talking to each other. Since that was the point I didn't see it as a bad thing. After a few ice breakers we have also started doing a team building exercise. That has been a hit. Last year our conference theme centered around a cruise ship theme. Attendees were divided into teams and given a bag of odds and ends such as scrap fabric pieces, safety pins, ribbon, feathers etc. They were then told to choose a model in the group and create an outfit to wear on a cruise. The creations were a riot! This year we had a wizard of Oz theme. Teams were given materials to make scarecrows. The challenge was half the team was blindfolded. The team members wearing the blindfolds built the scarecrows. The team members without were not allowed to touch the materials but instead had to give instructions to help the people wearing blindfolds. These have been great to illustrate it takes a team to find a cure. It also gets attendees talking to each other quickly about something fun and not too scary. A bonus was using the scarecrows as decorations at our dinner.

*This year we started a private Facebook group for conference attendees and got the excitement started before the retreat. The last couple of years we made the first night a superhero theme so kids would make crafts while parents mingle (during embassy suites happy hour reception) and the superhero costumes and princesses came to surprise the kids and take pictures. We have assigned seating at dinner (so new families are sitting with seasoned families) and have a slide show with the pics of the kids/families from each table as the microphone is passed for family introductions. . The slide show has cute little superhero graphics added to it.

==Use of Breakout Sessions==

It seems to me that giving a specific task is always good, but only if that task reflects the collective needs of the group. I would recommend that you use one of the following approaches:

:Survey attendees ahead of time to find out what they think are some of the barriers and then schedule focused working groups around those topics. Send out a background document ahead of time detailing the responses to the survey and giving people some information so that they’ll come to the meeting prepared OR plan talks for that morning so that they give people background on those issues.

:Organize the morning presentations as panels with a lot of discussion. Make one of the goals of the morning to identify major barriers. Then have a planning group (a few people from the morning presentations) meet to come up with specific breakout questions. Have those same individuals serve as facilitators for those groups (so that they clearly understand the context of why they were chosen).

:Make the breakouts longer and use the first 30 minutes or so to establish shared challenges. Then have the group pick one shared challenge to focus on. It is important for this type of breakout that you have someone facilitating and someone paying close attention to time, since you have to make a transition from general to specific.

Also, consider using activities to help determine priorities for your community. For instance, I organized one session at the conference (that received very positive feedback) for which I used the following format:

*One, overarching 10 minute presentation to give context
*Short 5 minute presentations (these could be examples of actual research projects that have failed or overall presentations of barriers)
*Break the group into small teams (those sitting around them, 4-5 people max) to come up with solutions in 30 minutes
*One person from each group presents those solutions
*Each individual votes on priorities (this was specific to funding for our session, but could also be used for organizational priorities or something similar).

==Tips for Managing the Timeline==

#Start planning your conference 12 to 14 months before the date.
#Book the site 12 to 14 months in advance.
#Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
#From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
#Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
#Mail registration forms about six to eight weeks before the registration deadline, but prepare to receive the majority of registrations just after the deadline date.
#As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
#Finalize the conference agenda as the registrations are coming in.
#As your registrations are coming in, prepare packets for your attendees.

Careful preparation means more time—and energy—to put out the inevitable last-minute fires!

==Site Selection==

Are your members clustered in one area? How close is your organization's location to the majority of members? What people resources do you have for the nitty-gritty of planning and working with the conference site?

What are your space requirements? You've already decided whether you need a church basement or a hotel; do you need multiple rooms for concurrent sessions? For exhibitors? For socializing?

==Tips for Site Selection==

#The number of people interested is the biggest factor in establishing the scope and location of your meeting.
#Hotel rates should be around $100.00 a night.
#Does the site you are considering have an indoor pool? An area where families can socialize?

For conferences in which your organization is expecting a smaller crowd, there are places the conference could be held that may be less costly than a hotel. One such venue could be faith-based or non-profit related organizations that have conference centers that are available for other organizations to use for a short period of time. [http://www.younglife.org/Camping/Pages/RetreatsAndConferenceUse.aspx Young Life] is an option for this. Furthermore, your organization may want to consider state parks, or university-owned meeting space or property, for example [https://www.bradwoods.org/facilities/meeting-spaces/ Bradford Woods].

==Virtual Conferences==
Virtual conferences have popped up over the last several years for many reasons, including a global health pandemic in 2020. Here are some tips and points to consider from those who have trialed this new format:

*To charge or not to charge - While your organization won't have many of the typical expenses (meeting room rental, food, etc.), there still certainly are costs for the meeting. Many have found that charging at least a nominal fee makes it more likely that participants who commit will actually attend.
**The events have ranged in cost from free admission, to very low cost for patient and family attendees, to quite high prices for all registrants. As the price went up, less patients/families were in attendance unless they were professional family representatives with their organizations supporting the registration fee.
**Several host groups mentioned the meeting sponsors at the open and/or close of each session, thanking them for their financial support that made possible free or lowered meeting fees.
**One meeting of a specific condition, which has a fee-based membership for the organization, required all attendees have their membership fees paid in full before allowing registration to the conference, and then there was a small conference fee for tech overhead costs. Attendance for their virtual meeting was lower than expected.
*Schedule/format - It may be harder for folks to dedicate three or four straight days to a conference from home while also juggling other responsibilities. However, for some it may still be easier to have the meeting in a compact format to help with child care arrangements, etc.
**Depending on the audience your meeting usually draws (from all local to from around the world), you will also need to give consideration to time zones at play.
**Consider building in breaks, especially if you are going to keep it at a limited number of days with longer sessions.
**Record the sessions for viewing later for those whom the date/time doesn't work as well. One group intentionally posted the recordings ASAP to allow those who couldn't watch it live to watch it as close to real-time as they desired.
*Meeting platforms - There are many options to choose from! One group specifically mentioned that Zoom worked well.
*Don't forget the time for fun and networking!
**Come up with a way for families to share introductions and pictures.
**Most attendees seem to appreciate some light-heartedness and fun at some point -- I've participated in Bingo, Jeopardy, happy hours, short video tours of the host city, musical presentations, and sing-alongs and shout-outs at various junctures during meetings.
**Just as important have been the times spent on self-care and wellbeing (contemplative ice-breaker questions, mini meditations, yoga sessions, mindfulness moments). And with two organizations with smaller membership and closer relationships, we held memorial times of remembrance for those who had passed away since our last convening.
**Many also express desire for more time to network and connect in conversation, whether through longer Q&As or topic specific break-out groups. Those serendipity moments when one encounters a new acquaintance of similar ilk, or discovers a connection point with a fellow attendee is lacking with virtual meetings. Allowing for an open chat box helps in this regard, as well as allowing for the smaller break out times to give time for quick introductions.
**As well, setting up other avenues for networking by sharing contact information of fellow attendees has been helpful ... with individual registrants given the choice to share contact information, of course.

You'll ultimately have to decide what's right for your audience.

Here are some examples:

--The Family Voices Leadership in Family Professional Partnerships conference was 1 workshop, 2 afternoons a week for 5 weeks. There was no charge as the cost was covered by the cooperative agreement.

--The National Parent Center Capacity Building Conference will be three afternoons (2 slots per afternoon with 6-7 workshops per slot for a total of around 40 workshops) over three consecutive weeks. There is a $50 charge per parent center but then they can register as many people as they want.

--The National Federation of Families for Children's Mental Health conference will be a Tuesday and Thursday afternoon with a plenary session, 15 or so workshops, and a town hall. The cost will be $50/person but $45/person for a group of 10 or more.

--One disease-specific organization is planning to run two back to back weekend days starting at different times to better accommodate their members around the world.

--Another shared the following: "We dialed way back from a five day in-person experience to five virtual sessions on the topics most requested by families. They were each 90 minutes long , both single speakers and panels. We ran them live either morning or evening and then edited them and repeated in the alternate time slot, as we are international and needed to cover Europe and Australia. We chose Wednesdays, 11:00 am and 7:00pm Eastern. We did some polling to get a sense of the logistics."

--Our event is two days. We are charging $25 for members and $50 for non members, $50 for professionals.

We wanted to make it affordable but also wanted to be able to cover or help cover the cost of the tech needs. We are also charging $10 for a optional swag bag of 5p- merchandise including a specially designed mask.

--We made the hours much shorter than our typical two-day conference. The conference was over a weekend concentrated in the middle of the day but was open for a full week so those who could not attend over the weekend, or were in a conflicting time zone. We did not charge. We did not want any barriers to attending in the time of COVID-19 and expected people in a variety of financial situations to register. People joined us from 33 countries. We had funding for the conference from sponsors so this was not a hardship for us as the organizers.

==After the Conference==

*Send thank-you notes to all the volunteers, speakers, contributors, vendors, and other people who participated in the conference. Additional ways to show appreciation to conference speakers includes: giving the speakers a bag or t-shirt with the organization's logo, a plaque, or some other small gift such as gourmet popcorn.
*Send thank-you notes and evaluation forms to the attendees.
*Did you realize in hindsight that you should have done something differently? Write it down!

==Internal Links==

*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

Staff

2021-01-17T20:38:34Z

Akrokosky: /* Staff Benefits */

In the beginning, staff is often voluntary. But as the organization grows, the day to day needs grow as well.

==Bringing on Senior Management==
'''Executive Directors and Compensation:'''

An essential aspect of bringing on board members and senior management is figuring out compensation. Along with the arduous task of developing good leadership with an Executive Director, organizations also have to navigate how much to offer them. There are a variety of suggestions, but it is always best to base it on the size, type, and resources of the particular organization.

States quite often have guidelines for the percentages and ranges you should offer, and it is good to keep in mind that different locations can have quite different expectations (20-25% higher in New York is a good example). A good rule of thumb is 10% - 12% of the organizational budget when you are in the 600K and above range. Organizations with smaller budgets will need to maintain a baseline salary that attracts the right talent and is regionally appropriate.

There is also a free downloadable program for making this sort of analysis. It can be found [http://www.erieri.com/abouteri here].

==Staff Benefits==
''Health Care''

Many organizations wish to give their staff benefits in addition to salaries, such as health care. These plans can range from simply covering the employees to their entire families. (For those who opt out of the healthcare plan to go through their spouses, they've negotiated a pay raise or another benefit.) Other groups often give stipends in order to help people buy health care on their own. We offer health plan access to our employees at their own expense, with a small stipend from us to offset the cost ($200/month for full-time employees, rises to $400/month after five years of service).

There are many organizations that provide health care to non-profits, and often take care of things such as withholdings and government reporting. These include, but are not limited to:
* [http://www.human-capital.com/ Human Capital, LLC]
* [http://www.bcbs.com/ Blue Cross Blue Shield]

Another method is to join a bureau of small businesses, which group workers from different businesses together in order to increase the risk pool and get fairer prices.

''Retirement Benefits''

Different groups with various budgets and numbers of employees offer retirement benefits for their employees through a variety of avenues. 401K, 403B, and [https://www.irs.gov/retirement-plans/plan-sponsor/simple-ira-plan Simple IRA] were all discussed. Companies used to offer these benefits include T. Rowe Price, Vanguard, Guildeline, and Paychex. Many of the disease-specific support organizations choose to offer some degree of an employer match of contributions as well.

''For Help Coordinating Multiple Benefits''

TriNet manages payroll, health insurance, and retirement benefits for one group.

==Purchasing Equipment==
Sometimes purchasing technology for your organization can be a great financial burden. A potential solution is to utilize programs such as HP’s employee non-profit donation program, in which the employee chooses a non-profit and pays 25% of the retail of a computer or printer, while the company pays the remaining 75%. Another solution is to check your local Craig’s list for used technology. However, if you go with this option be sure to completely reformat the hard drive and install the OS from scratch.

Depending on the position a staff member holds, they may be in need of a computer or other equipment to effectively execute the duties of their job. With any type of equipment purchase, it is important to specify whether or not the staff member will need to return the equipment once his or her project or assignment has been completed. One way organizations have dealt with this issue is by tagging the newly purchased laptop with a barcode, and explicitly stating in writing that the laptop is the property of the organization. Some other examples of how handle the logistics of purchasing equipment for a staff member can be found below.

Jim Moore

AXYS

“While the hardware has value, a 2-year-old laptop is halfway to being an antique.

Furthermore, if a volunteer commits to using a device, it is likely that the person will commit to using it lock, stock, and barrel. This means that it will be full of “personal” information as well as “company” business. Otherwise the volunteer is saddled with an extra device. Imagine being forced to carry two cell phones. Now imagine two laptops.

A computer is fully depreciated after 3 years, so, if the volunteer uses it for 2 years, its current value is only 1/3 of the purchase price. If you paid $800 for it, after 2 years, it’s worth $267, and you know you could not possibly sell it for that. If the person used it as described, $267/year for those services is a bargain.

If equipment must be returned to the organization, a possible solution is to inventory these items (Brand, Model, Serial Number, Software Titles and Codes as installed, Accessories, etc.), and get a signed agreement that the device (described with that specific info) belongs to the organization and must be returned. I suggest a clause in the agreement be included that states that unreturned items will be considered compensation to the person – at full purchase price, including all installed software – and that said compensation will be declared to the IRS in the form of a 1099-MISC. Get the person’s SS# on the agreement. Avoiding the tax burden on the device/software should give you lots of leverage to get the device back. If you take that tactic, remember to declare that compensation to a DIRECTOR in your 990.”

==Job Postings==

Finding qualified staff and building a positive staff community is absolutely vital to the success of any organization. Here are some places where organizations have had success:

* [http://www.idealist.org Idealist]
A non-profit organization that will post jobs for $80.

* [http://www.geneticalliance.org/about/council Genetic Alliance Community Job Board]
You can post a short job description on our Community Job Board. Nonprofits can post a job for only $25 a month. For-profit companies can post for $50 a month.

==Bonuses==

Many organizations will give out end-of-the-year bonuses to their staff. This is generally quite appreciated by staff members, and provides a nice dose of goodwill around the holidays. Since staff members at non-profits will often work for less than their counterparts in private industry, not to mention that staff members work very hard in general, it is beneficial to show them that all the hard work they put in throughout the year is appreciated.

==Internal Links==
*[[Advisory Boards]]
*[[Bylaws and Articles]]
*[[Developing a Governance Board|Governance Board]]
*[[Finding a Lawyer]]
*[[Your Organization's Name Is Important|Organization's Name]]
*[[Tax and Finance]]
*[[Working Remotely]]
*[[Working with a Lawyer]]

Conferences, Workshops, and Meetings for Affected Individuals

2020-08-23T16:29:26Z

Akrokosky: More changes to Virtual Conference section

Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of community. Creating these events involves two major tasks: determining the scope and objectives of your meeting, and doing the logistical planning for the event. You can read some examples of other conferences at our [[Setting Up A National Conference]] page.

==Determining the Scope and Objectives of Your Meeting==

Conferences include many sizes and types of events. They can be as simple as an afternoon session with a speaker followed by some social time, or as extensive as a lodgings-based multiday event with a mix of speakers and activities and with meals served on site. Consider these issues as you plan conferences:

*Your members' interests
*Your goals for serving your membership
*Costs
*Available resources

When creating a new conference, survey your members. Ask them what they want from a conference, how much time they would want to spend, how far they would be willing to travel. Ask them what they can afford, and get a sense of how many interested members would require financial assistance. Even if you know for certain that your members need a certain kind of conference or educational experience, the starting point should be what they want.

This is initial part of planning is where you can ask open-ended questions, such as "what time of year works best for your family?"

Tips for Date Selection

#Spring and fall meetings have good attendance. Families may travel during the summer, so offering the meeting as a vacation may have appeal. Winter storms can hinder travel.
#Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
#Consider holidays as you plan events—not just major holidays but feast days and other observances, depending on your members' affiliations. Holidays (such as Memorial Day, Independence Day, and Labor Day) can mean lower rates for hotels in business cities.
#Know when specialists that focus on your organization's condition go to their professional meetings. You may lose potential speakers if your conference coincides with meetings they must attend.

==Your Members' Interests==

Ask them what they want. This is their conference, and it cannot succeed unless it meets real needs. Some questions to consider: do they want a one-day conference or something longer? Do they want to meet on a weekend or weekday? Are there particular holidays that could coincide with this conference? Are there holiday periods you should avoid? What can they afford?

Answers to these questions will help you get a sense of how many people will actually come to a conference, a crucial starting point for planning location and activities.

==Your Goals for Serving Your Membership==

This is where you reconcile your sense of what your members need with what they want, and where you use what they want to create a curriculum for getting it to them. They may say their top need is to learn how to work for a cure for their children. This could translate into a conference in which they get talks about the current state of research from scientists along with workshops about informed consent and donating tissue.

==Costs and Scholarships==

Travel distances, lodging options, speaker costs, and supplies for the meeting will all figure into your final budget. It takes time to establish the details of this budget, but you'll need to start with a ballpark figure. As you consider what your families want and what your organization needs to share with them, you need to go beyond what families can afford and have a good sense of what your organization's costs will be. Consider name badges, signs for the conference site, packets for the members, registration forms, mailing costs, equipment rental, honoraria or gifts for your speakers, day care, etc.

Many organizations provide financial assistance to some of their members. To learn about some of the scholarship programs offered by other organizations, visit [[Scholarships for your participants/families/members]] and [[Setting Up A National Conference]].

Here is what one health advocate had to say about an organization's experience with conference funding and costs:

"We have had all our expenses covered for the past two conferences through sponsorships and low registration fees ($110 for the first family member, $90 for others; no fee for affected individuals or those under eight-years-old). We have a separate scholarship fund for needy families to attend and ask our donors to make a separate donation if they wish to help a family attend. We usually have enough to pay the registration fees and hotel fees for 2-3 nights for 7-10 families. We do not pay transportation. We go by the honor system. If they say they have a need and fill out the simple application form, then we try to help them. We give preference to first time attending families so if someone asks for a scholarship repeatedly I can simply say others that haven’t yet had a chance to attend have been chosen."

===Honorariums===
As for payment to speakers, groups are all over the place on this. Some pay none - though it is certainly just to compensate people for their time, it is hard to find funding for it. In some cases, groups fundraise for an event just for that expense.

For instance, PXE International, a very small organization (budget of ~$250K), gives an honorarium only when the speaker is critical to a meeting (a low vision specialist or plastic surgeon at a patient info meeting) and they can't find anyone else. They have paid anywhere between $100 to $500 for a workshop of a couple of hours.

Of course, top notch speakers charge a great deal - speaking fees for major speakers are in the tens of thousands and occasionally hundreds of thousands.

==Tips for Budgeting==

#Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
#You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
#Plan on gratuities of about 25% for meals.
#You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
#Don't forget conferences badges, printing and mailing costs, equipment rentals, gifts for speakers, and day care costs.

==Available Resources==

Consider in-kind and financial donations your organization can obtain. Is there a church that can offer space for your meeting? Are there manufacturers whose products your membership uses routinely? As with costs, you'll revisit resources as you do logistical planning, but a general sense of whom you can tap will help you scope your meeting effectively.

==Tips for Getting Funding==

#Exhibitor fees average $1,000.00 per booth.
#Give potential exhibitors about 6 months of lead time.
#If a company can't exhibit, ask for a donation. If you receive corporate sponsorships, make sure to provide them with a tax donation receipt.
#Do your members use specific products regularly, whether over-the-counter supplies or prescription medications? Ask the makers to exhibit or to provide a donation.
#If searching for a photographer or videographer to document your event, you may find success by reaching out to local colleges or universities. Students may provide this service for little or no cost.

==Logistical Planning==

Logistical planning revisits the same issues as setting scope and objectives, and you will also get feedback from your members in this phase, but the questions you ask will come with a range of options, as opposed to be open-ended.

There are several major aspects to planning a conference:

*Site selection
*Date selection
*Budgeting
*Funding
*[[Speaker selection and management]]
*[[Childcare]]
*Managing the timeline
*Photography or videography at the event
*Post-event communication

===Room-sharing and things to think about===

*If guests pay their own way to an event, and the organization has a contract with the hotel, the contract should stipulate that guests are responsible for EVERYTHING related to their stays...fees, damage, etc....and that guests make their own room arrangements. That separation should keep the organization safe from liability for individuals’ behaviors.
*If the organization is covering basic hotel costs (say for presenters), the contract should stipulate that, while the organization is paying for the room at the negotiated rate, guests are responsible for incidentals and any other fees or damage.
*If the organization insists on room sharing, things get murky, because proving culpability between two competing stories becomes a challenge. The organization has imposed the roommate requirement, and thereby puts all guests at risk of having a bad roommate. The person whose credit card secures the “incidental” charges may not be the perpetrator of damage or consumer of minibar treats, but that person is stuck with the bill. (Worse, if the organization uses it’s card to secure all rooms, all guests are completely off the hook. Fortunately, most hotels won’t allow guests to register without swiping a personal credit card.) Meanwhile, if the perpetrator does not cover the costs s/he incurs, the “damaged’ guest will inevitably come to the organization for a resolution. To keep the peace, the organization – the entity demanding room sharing – should probably be prepared to step up and absorb the costs and then (perhaps) pursue the perpetrator for reimbursement...or just suck it up as a cost of doing business.
*In all cases, the organization should disclaim to its guests the terms and conditions of the hotel arrangements that apply to the situation and declare clearly that the organization bears no responsibility for incidentals and damage. These stipulations should be stated as a condition of attendance at the event...very likely in a simple, boilerplate disclaimer in fine print somewhere in the “registration” or “invitation” acceptance materials. In registration materials, the financial transaction adds substance to the disclaimer. In “invitation acceptance” materials, it’s wise to get the guest to somehow acknowledge the disclaimer with a checkbox or initials along with a reminder that the hotel will require a personal credit card at registration to secure the room.

==Creative Welcome Sessions and Introductions==

*We have a New Family Orientation prior to the welcome reception. We connect new families with buddy families prior to this orientation and then they meet there. We go over ins and outs of the conference then. After that all families come to a very easy going and loud welcome reception. We don't do larger introductions there. Families can meet speakers throughout the weekend. They can talk to researchers at meals and poster sessions. Badges are color coded by form of batten and bereaved family badges have angel stickers.

*One we've used is cardboard questions...on one side answer Who I was... On the other Who I am now...

*As you know, ours is not a pediatric disease, so I probably am the last person to provide advice----but this year for the first time we had a woman affected with the language form of our dementia record a 3 min video welcome. She was also present and came up to the dais, but given her impairment a recording was definitely the way to go. It was incredibly moving and powerful, and conveyed a level of respect to the individuals affected that we had not before---given that this is a dementia, we historically have focused on the caregivers/families and spoken “about” the individuals affected. I’m just thinking that there may be some parallels here. For you, I wonder if you can select one boy who can talk about something great he’s accomplished this past year? Would be uplifting and a hopeful model for all?

*We have begun to use very pointed questions that one turns to one’s neighbor and shares about – for 2 minutes each. And then popcorn report out…

*Does anyone watch the Tony awards? They pan onto an actor (male or female) and the person says either " I am an actor because" or I am a producer because or they give their 2 sentence spiel. Or they give their spiel and then say. I'm Xxx and I'm an actor.

*We sometimes do table introductions and sharing instead of full room introductions and sharing. Another idea is to have people stand up if they have children 0-5, 6-13, 14-high school, out of HS, and/or some other characteristics.

*We have a mentor program. Returning families connect with new families prior to conference and at conference. We also set up tables by region so families can meet people in their area. We also have a group meeting for Moms only and Dads only.

*Sometimes to shake things up we do a stand up sit down game with fund and serious topics. But my only warning is whoever manages this needs to have a good command of the room. If not you can lose the room.

*Years ago I heard about one group who gave each family a poster and they were asked to bring photos of their family. They arranged the photos, listed where they were from and added any creative comments (hobbies, pets, jobs, etc.. The photos were on display at the Welcome reception and this helped with families getting to know one another early on. This takes some planning and materials and you probably won't get people to bring photos at this late a date. Smart phones have also taken away our spending time to print photos off.

*Our program director is very witty and funny. We have her moderate the ice breaker session and she makes it really fun with a lot of laughs. It seems to relax our members because they are still quite tense right at the beginning, especially the newcomers. Here’s a quick list of things she’s done:
**Standup/sitdown questions (how many conferences?, etc.)
**Purchased beach balls from the dollar store and wrote questions on each colored wedge in marker. Then broke into smaller groups and tossed the ball to each other and whatever question your right thumb lands nearest, you answer.
**Separate into 12 groups by birth month but let the group figure it out on their own.
**Had a huge circle in alphabetical order by last name
**This year she did “the wave” and it was so, so much fun.

*For our first morning session we create tables of 8 people who I put together carefully with newcomers and old timers and a moderator who does a short welcome and then gives a question to be answered by all at the table and they talk about that for about 15 minutes and then move on to the next question – have about 4 questions in all and it is a nice way for everyone to get to know each other better and make some friends.

*We also play “NBIA Bingo” at the end of this session. We create Bingo cards with questions in each block, like “Who is someone who has a baclofen pump?” and they have to walk around and ask people if they fit the question and if so, that person writes their name in the block. First person to get a full card filled out, wins. We give prizes to top 3 and then say that anyone who fills out their card during the day can turn it in for a NBIA pin so that gets them continuing to ask people questions and talking even after the game is over. Takes about 20 minutes or so depending on your crowd to get a winner, so allow enough time or maybe you could make it one line rather than a full card needed to win.

:I create 8 different versions of the game so each person at each table has different questions so everyone isn’t getting the same people and questions. I include a question for every family so you have to know your group pretty well or if desperate I put “Who is someone from Austin, Texas?” Families can go to their participant list and find the name and then search for that family. Also put questions about the organization like when were we founded, etc. and they can ask others or go to our website where they can find the answers there.

*We do what you have always done, but only have 30 families. I say "tell us where you are from and how many conferences you have attended." Recently, I heard a Podcast where the man introduced each speaker by the answer they had earlier give him to this q: what was the last illegal thing you did? Thought that would be a good change (or some other question).

*For our patient meetings, we use "Share your most embarrassing moment" as the icebreaker at the first dinner. Most people actually share something embarrassing, but for those few who don't feel comfortable, we ask them to share something that people wouldn't know about them. This has been so much fun, and the people who have the best stories are usually the ones you don't expect!

*One thing we did a few years ago that worked well was a spoof on speed dating. Chairs were set up opposite one another. On one side people stayed in their seats and on the other side they moved over a chair every three minutes. We gave them a list of questions they could ask one another if they were shy. It worked so well that it sort of fell apart at the end because everyone was talking to each other. Since that was the point I didn't see it as a bad thing. After a few ice breakers we have also started doing a team building exercise. That has been a hit. Last year our conference theme centered around a cruise ship theme. Attendees were divided into teams and given a bag of odds and ends such as scrap fabric pieces, safety pins, ribbon, feathers etc. They were then told to choose a model in the group and create an outfit to wear on a cruise. The creations were a riot! This year we had a wizard of Oz theme. Teams were given materials to make scarecrows. The challenge was half the team was blindfolded. The team members wearing the blindfolds built the scarecrows. The team members without were not allowed to touch the materials but instead had to give instructions to help the people wearing blindfolds. These have been great to illustrate it takes a team to find a cure. It also gets attendees talking to each other quickly about something fun and not too scary. A bonus was using the scarecrows as decorations at our dinner.

*This year we started a private Facebook group for conference attendees and got the excitement started before the retreat. The last couple of years we made the first night a superhero theme so kids would make crafts while parents mingle (during embassy suites happy hour reception) and the superhero costumes and princesses came to surprise the kids and take pictures. We have assigned seating at dinner (so new families are sitting with seasoned families) and have a slide show with the pics of the kids/families from each table as the microphone is passed for family introductions. . The slide show has cute little superhero graphics added to it.

==Use of Breakout Sessions==

It seems to me that giving a specific task is always good, but only if that task reflects the collective needs of the group. I would recommend that you use one of the following approaches:

:Survey attendees ahead of time to find out what they think are some of the barriers and then schedule focused working groups around those topics. Send out a background document ahead of time detailing the responses to the survey and giving people some information so that they’ll come to the meeting prepared OR plan talks for that morning so that they give people background on those issues.

:Organize the morning presentations as panels with a lot of discussion. Make one of the goals of the morning to identify major barriers. Then have a planning group (a few people from the morning presentations) meet to come up with specific breakout questions. Have those same individuals serve as facilitators for those groups (so that they clearly understand the context of why they were chosen).

:Make the breakouts longer and use the first 30 minutes or so to establish shared challenges. Then have the group pick one shared challenge to focus on. It is important for this type of breakout that you have someone facilitating and someone paying close attention to time, since you have to make a transition from general to specific.

Also, consider using activities to help determine priorities for your community. For instance, I organized one session at the conference (that received very positive feedback) for which I used the following format:

*One, overarching 10 minute presentation to give context
*Short 5 minute presentations (these could be examples of actual research projects that have failed or overall presentations of barriers)
*Break the group into small teams (those sitting around them, 4-5 people max) to come up with solutions in 30 minutes
*One person from each group presents those solutions
*Each individual votes on priorities (this was specific to funding for our session, but could also be used for organizational priorities or something similar).

==Tips for Managing the Timeline==

#Start planning your conference 12 to 14 months before the date.
#Book the site 12 to 14 months in advance.
#Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
#From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
#Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
#Mail registration forms about six to eight weeks before the registration deadline, but prepare to receive the majority of registrations just after the deadline date.
#As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
#Finalize the conference agenda as the registrations are coming in.
#As your registrations are coming in, prepare packets for your attendees.

Careful preparation means more time—and energy—to put out the inevitable last-minute fires!

==Site Selection==

Are your members clustered in one area? How close is your organization's location to the majority of members? What people resources do you have for the nitty-gritty of planning and working with the conference site?

What are your space requirements? You've already decided whether you need a church basement or a hotel; do you need multiple rooms for concurrent sessions? For exhibitors? For socializing?

==Tips for Site Selection==

#The number of people interested is the biggest factor in establishing the scope and location of your meeting.
#Hotel rates should be around $100.00 a night.
#Does the site you are considering have an indoor pool? An area where families can socialize?

For conferences in which your organization is expecting a smaller crowd, there are places the conference could be held that may be less costly than a hotel. One such venue could be faith-based or non-profit related organizations that have conference centers that are available for other organizations to use for a short period of time. [http://www.younglife.org/Camping/Pages/RetreatsAndConferenceUse.aspx Young Life] is an option for this. Furthermore, your organization may want to consider state parks, or university-owned meeting space or property, for example [https://www.bradwoods.org/facilities/meeting-spaces/ Bradford Woods].

==Virtual Conferences==
Virtual conferences have popped up over the last several years for many reasons, including a global health pandemic in 2020. Here are some tips and points to consider from those who have trialed this new format:

*To charge or not to charge - While your organization won't have many of the typical expenses (meeting room rental, food, etc.), there still certainly are costs for the meeting. Many have found that charging at least a nominal fee makes it more likely that participants who commit will actually attend.
**The events have ranged in cost from free admission, to very low cost for patient and family attendees, to quite high prices for all registrants. As the price went up, less patients/families were in attendance unless they were professional family representatives with their organizations supporting the registration fee.
**Several host groups mentioned the meeting sponsors at the open and/or close of each session, thanking them for their financial support that made possible free or lowered meeting fees.
**One meeting of a specific condition, which has a fee-based membership for the organization, required all attendees have their membership fees paid in full before allowing registration to the conference, and then there was a small conference fee for tech overhead costs. Attendance for their virtual meeting was lower than expected.
*Schedule/format - It may be harder for folks to dedicate three or four straight days to a conference from home while also juggling other responsibilities. However, for some it may still be easier to have the meeting in a compact format to help with child care arrangements, etc.
**Depending on the audience your meeting usually draws (from all local to from around the world), you will also need to give consideration to time zones at play.
**Consider building in breaks, especially if you are going to keep it at a limited number of days with longer sessions.
**Record the sessions for viewing later for those whom the date/time doesn't work as well.
*Meeting platforms - There are many options to choose from! One group specifically mentioned that Zoom worked well.
*Don't forget the time for fun and networking!
**Come up with a way for families to share introductions and pictures.
**Most attendees seem to appreciate some light-heartedness and fun at some point -- I've participated in Bingo, Jeopardy, happy hours, short video tours of the host city, musical presentations, and sing-alongs and shout-outs at various junctures during meetings.
**Just as important have been the times spent on self-care and wellbeing (contemplative ice-breaker questions, mini meditations, yoga sessions, mindfulness moments). And with two organizations with smaller membership and closer relationships, we held memorial times of remembrance for those who had passed away since our last convening.
**Many also express desire for more time to network and connect in conversation, whether through longer Q&As or topic specific break-out groups. Those serendipity moments when one encounters a new acquaintance of similar ilk, or discovers a connection point with a fellow attendee is lacking with virtual meetings. Allowing for an open chat box helps in this regard, as well as allowing for the smaller break out times to give time for quick introductions.
**As well, setting up other avenues for networking by sharing contact information of fellow attendees has been helpful ... with individual registrants given the choice to share contact information, of course.

You'll ultimately have to decide what's right for your audience.

Here are some examples:

--The Family Voices Leadership in Family Professional Partnerships conference was 1 workshop, 2 afternoons a week for 5 weeks. There was no charge as the cost was covered by the cooperative agreement.

--The National Parent Center Capacity Building Conference will be three afternoons (2 slots per afternoon with 6-7 workshops per slot for a total of around 40 workshops) over three consecutive weeks. There is a $50 charge per parent center but then they can register as many people as they want.

--The National Federation of Families for Children's Mental Health conference will be a Tuesday and Thursday afternoon with a plenary session, 15 or so workshops, and a town hall. The cost will be $50/person but $45/person for a group of 10 or more.

--One disease-specific organization is planning to run two back to back weekend days starting at different times to better accommodate their members around the world.

--Another shared the following: "We dialed way back from a five day in-person experience to five virtual sessions on the topics most requested by families. They were each 90 minutes long , both single speakers and panels. We ran them live either morning or evening and then edited them and repeated in the alternate time slot, as we are international and needed to cover Europe and Australia. We chose Wednesdays, 11:00 am and 7:00pm Eastern. We did some polling to get a sense of the logistics."

--Our event is two days. We are charging $25 for members and $50 for non members, $50 for professionals.

We wanted to make it affordable but also wanted to be able to cover or help cover the cost of the tech needs. We are also charging $10 for a optional swag bag of 5p- merchandise including a specially designed mask.

--We made the hours much shorter than our typical two-day conference. The conference was over a weekend concentrated in the middle of the day but was open for a full week so those who could not attend over the weekend, or were in a conflicting time zone. We did not charge. We did not want any barriers to attending in the time of COVID-19 and expected people in a variety of financial situations to register. People joined us from 33 countries. We had funding for the conference from sponsors so this was not a hardship for us as the organizers.

==After the Conference==

*Send thank-you notes to all the volunteers, speakers, contributors, vendors, and other people who participated in the conference. Additional ways to show appreciation to conference speakers includes: giving the speakers a bag or t-shirt with the organization's logo, a plaque, or some other small gift such as gourmet popcorn.
*Send thank-you notes and evaluation forms to the attendees.
*Did you realize in hindsight that you should have done something differently? Write it down!

==Internal Links==

*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

Conferences, Workshops, and Meetings for Affected Individuals

2020-08-23T16:21:11Z

Akrokosky: Added information about virtual conferences

Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of community. Creating these events involves two major tasks: determining the scope and objectives of your meeting, and doing the logistical planning for the event. You can read some examples of other conferences at our [[Setting Up A National Conference]] page.

==Determining the Scope and Objectives of Your Meeting==

Conferences include many sizes and types of events. They can be as simple as an afternoon session with a speaker followed by some social time, or as extensive as a lodgings-based multiday event with a mix of speakers and activities and with meals served on site. Consider these issues as you plan conferences:

*Your members' interests
*Your goals for serving your membership
*Costs
*Available resources

When creating a new conference, survey your members. Ask them what they want from a conference, how much time they would want to spend, how far they would be willing to travel. Ask them what they can afford, and get a sense of how many interested members would require financial assistance. Even if you know for certain that your members need a certain kind of conference or educational experience, the starting point should be what they want.

This is initial part of planning is where you can ask open-ended questions, such as "what time of year works best for your family?"

Tips for Date Selection

#Spring and fall meetings have good attendance. Families may travel during the summer, so offering the meeting as a vacation may have appeal. Winter storms can hinder travel.
#Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
#Consider holidays as you plan events—not just major holidays but feast days and other observances, depending on your members' affiliations. Holidays (such as Memorial Day, Independence Day, and Labor Day) can mean lower rates for hotels in business cities.
#Know when specialists that focus on your organization's condition go to their professional meetings. You may lose potential speakers if your conference coincides with meetings they must attend.

==Your Members' Interests==

Ask them what they want. This is their conference, and it cannot succeed unless it meets real needs. Some questions to consider: do they want a one-day conference or something longer? Do they want to meet on a weekend or weekday? Are there particular holidays that could coincide with this conference? Are there holiday periods you should avoid? What can they afford?

Answers to these questions will help you get a sense of how many people will actually come to a conference, a crucial starting point for planning location and activities.

==Your Goals for Serving Your Membership==

This is where you reconcile your sense of what your members need with what they want, and where you use what they want to create a curriculum for getting it to them. They may say their top need is to learn how to work for a cure for their children. This could translate into a conference in which they get talks about the current state of research from scientists along with workshops about informed consent and donating tissue.

==Costs and Scholarships==

Travel distances, lodging options, speaker costs, and supplies for the meeting will all figure into your final budget. It takes time to establish the details of this budget, but you'll need to start with a ballpark figure. As you consider what your families want and what your organization needs to share with them, you need to go beyond what families can afford and have a good sense of what your organization's costs will be. Consider name badges, signs for the conference site, packets for the members, registration forms, mailing costs, equipment rental, honoraria or gifts for your speakers, day care, etc.

Many organizations provide financial assistance to some of their members. To learn about some of the scholarship programs offered by other organizations, visit [[Scholarships for your participants/families/members]] and [[Setting Up A National Conference]].

Here is what one health advocate had to say about an organization's experience with conference funding and costs:

"We have had all our expenses covered for the past two conferences through sponsorships and low registration fees ($110 for the first family member, $90 for others; no fee for affected individuals or those under eight-years-old). We have a separate scholarship fund for needy families to attend and ask our donors to make a separate donation if they wish to help a family attend. We usually have enough to pay the registration fees and hotel fees for 2-3 nights for 7-10 families. We do not pay transportation. We go by the honor system. If they say they have a need and fill out the simple application form, then we try to help them. We give preference to first time attending families so if someone asks for a scholarship repeatedly I can simply say others that haven’t yet had a chance to attend have been chosen."

===Honorariums===
As for payment to speakers, groups are all over the place on this. Some pay none - though it is certainly just to compensate people for their time, it is hard to find funding for it. In some cases, groups fundraise for an event just for that expense.

For instance, PXE International, a very small organization (budget of ~$250K), gives an honorarium only when the speaker is critical to a meeting (a low vision specialist or plastic surgeon at a patient info meeting) and they can't find anyone else. They have paid anywhere between $100 to $500 for a workshop of a couple of hours.

Of course, top notch speakers charge a great deal - speaking fees for major speakers are in the tens of thousands and occasionally hundreds of thousands.

==Tips for Budgeting==

#Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
#You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
#Plan on gratuities of about 25% for meals.
#You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
#Don't forget conferences badges, printing and mailing costs, equipment rentals, gifts for speakers, and day care costs.

==Available Resources==

Consider in-kind and financial donations your organization can obtain. Is there a church that can offer space for your meeting? Are there manufacturers whose products your membership uses routinely? As with costs, you'll revisit resources as you do logistical planning, but a general sense of whom you can tap will help you scope your meeting effectively.

==Tips for Getting Funding==

#Exhibitor fees average $1,000.00 per booth.
#Give potential exhibitors about 6 months of lead time.
#If a company can't exhibit, ask for a donation. If you receive corporate sponsorships, make sure to provide them with a tax donation receipt.
#Do your members use specific products regularly, whether over-the-counter supplies or prescription medications? Ask the makers to exhibit or to provide a donation.
#If searching for a photographer or videographer to document your event, you may find success by reaching out to local colleges or universities. Students may provide this service for little or no cost.

==Logistical Planning==

Logistical planning revisits the same issues as setting scope and objectives, and you will also get feedback from your members in this phase, but the questions you ask will come with a range of options, as opposed to be open-ended.

There are several major aspects to planning a conference:

*Site selection
*Date selection
*Budgeting
*Funding
*[[Speaker selection and management]]
*[[Childcare]]
*Managing the timeline
*Photography or videography at the event
*Post-event communication

===Room-sharing and things to think about===

*If guests pay their own way to an event, and the organization has a contract with the hotel, the contract should stipulate that guests are responsible for EVERYTHING related to their stays...fees, damage, etc....and that guests make their own room arrangements. That separation should keep the organization safe from liability for individuals’ behaviors.
*If the organization is covering basic hotel costs (say for presenters), the contract should stipulate that, while the organization is paying for the room at the negotiated rate, guests are responsible for incidentals and any other fees or damage.
*If the organization insists on room sharing, things get murky, because proving culpability between two competing stories becomes a challenge. The organization has imposed the roommate requirement, and thereby puts all guests at risk of having a bad roommate. The person whose credit card secures the “incidental” charges may not be the perpetrator of damage or consumer of minibar treats, but that person is stuck with the bill. (Worse, if the organization uses it’s card to secure all rooms, all guests are completely off the hook. Fortunately, most hotels won’t allow guests to register without swiping a personal credit card.) Meanwhile, if the perpetrator does not cover the costs s/he incurs, the “damaged’ guest will inevitably come to the organization for a resolution. To keep the peace, the organization – the entity demanding room sharing – should probably be prepared to step up and absorb the costs and then (perhaps) pursue the perpetrator for reimbursement...or just suck it up as a cost of doing business.
*In all cases, the organization should disclaim to its guests the terms and conditions of the hotel arrangements that apply to the situation and declare clearly that the organization bears no responsibility for incidentals and damage. These stipulations should be stated as a condition of attendance at the event...very likely in a simple, boilerplate disclaimer in fine print somewhere in the “registration” or “invitation” acceptance materials. In registration materials, the financial transaction adds substance to the disclaimer. In “invitation acceptance” materials, it’s wise to get the guest to somehow acknowledge the disclaimer with a checkbox or initials along with a reminder that the hotel will require a personal credit card at registration to secure the room.

==Creative Welcome Sessions and Introductions==

*We have a New Family Orientation prior to the welcome reception. We connect new families with buddy families prior to this orientation and then they meet there. We go over ins and outs of the conference then. After that all families come to a very easy going and loud welcome reception. We don't do larger introductions there. Families can meet speakers throughout the weekend. They can talk to researchers at meals and poster sessions. Badges are color coded by form of batten and bereaved family badges have angel stickers.

*One we've used is cardboard questions...on one side answer Who I was... On the other Who I am now...

*As you know, ours is not a pediatric disease, so I probably am the last person to provide advice----but this year for the first time we had a woman affected with the language form of our dementia record a 3 min video welcome. She was also present and came up to the dais, but given her impairment a recording was definitely the way to go. It was incredibly moving and powerful, and conveyed a level of respect to the individuals affected that we had not before---given that this is a dementia, we historically have focused on the caregivers/families and spoken “about” the individuals affected. I’m just thinking that there may be some parallels here. For you, I wonder if you can select one boy who can talk about something great he’s accomplished this past year? Would be uplifting and a hopeful model for all?

*We have begun to use very pointed questions that one turns to one’s neighbor and shares about – for 2 minutes each. And then popcorn report out…

*Does anyone watch the Tony awards? They pan onto an actor (male or female) and the person says either " I am an actor because" or I am a producer because or they give their 2 sentence spiel. Or they give their spiel and then say. I'm Xxx and I'm an actor.

*We sometimes do table introductions and sharing instead of full room introductions and sharing. Another idea is to have people stand up if they have children 0-5, 6-13, 14-high school, out of HS, and/or some other characteristics.

*We have a mentor program. Returning families connect with new families prior to conference and at conference. We also set up tables by region so families can meet people in their area. We also have a group meeting for Moms only and Dads only.

*Sometimes to shake things up we do a stand up sit down game with fund and serious topics. But my only warning is whoever manages this needs to have a good command of the room. If not you can lose the room.

*Years ago I heard about one group who gave each family a poster and they were asked to bring photos of their family. They arranged the photos, listed where they were from and added any creative comments (hobbies, pets, jobs, etc.. The photos were on display at the Welcome reception and this helped with families getting to know one another early on. This takes some planning and materials and you probably won't get people to bring photos at this late a date. Smart phones have also taken away our spending time to print photos off.

*Our program director is very witty and funny. We have her moderate the ice breaker session and she makes it really fun with a lot of laughs. It seems to relax our members because they are still quite tense right at the beginning, especially the newcomers. Here’s a quick list of things she’s done:
**Standup/sitdown questions (how many conferences?, etc.)
**Purchased beach balls from the dollar store and wrote questions on each colored wedge in marker. Then broke into smaller groups and tossed the ball to each other and whatever question your right thumb lands nearest, you answer.
**Separate into 12 groups by birth month but let the group figure it out on their own.
**Had a huge circle in alphabetical order by last name
**This year she did “the wave” and it was so, so much fun.

*For our first morning session we create tables of 8 people who I put together carefully with newcomers and old timers and a moderator who does a short welcome and then gives a question to be answered by all at the table and they talk about that for about 15 minutes and then move on to the next question – have about 4 questions in all and it is a nice way for everyone to get to know each other better and make some friends.

*We also play “NBIA Bingo” at the end of this session. We create Bingo cards with questions in each block, like “Who is someone who has a baclofen pump?” and they have to walk around and ask people if they fit the question and if so, that person writes their name in the block. First person to get a full card filled out, wins. We give prizes to top 3 and then say that anyone who fills out their card during the day can turn it in for a NBIA pin so that gets them continuing to ask people questions and talking even after the game is over. Takes about 20 minutes or so depending on your crowd to get a winner, so allow enough time or maybe you could make it one line rather than a full card needed to win.

:I create 8 different versions of the game so each person at each table has different questions so everyone isn’t getting the same people and questions. I include a question for every family so you have to know your group pretty well or if desperate I put “Who is someone from Austin, Texas?” Families can go to their participant list and find the name and then search for that family. Also put questions about the organization like when were we founded, etc. and they can ask others or go to our website where they can find the answers there.

*We do what you have always done, but only have 30 families. I say "tell us where you are from and how many conferences you have attended." Recently, I heard a Podcast where the man introduced each speaker by the answer they had earlier give him to this q: what was the last illegal thing you did? Thought that would be a good change (or some other question).

*For our patient meetings, we use "Share your most embarrassing moment" as the icebreaker at the first dinner. Most people actually share something embarrassing, but for those few who don't feel comfortable, we ask them to share something that people wouldn't know about them. This has been so much fun, and the people who have the best stories are usually the ones you don't expect!

*One thing we did a few years ago that worked well was a spoof on speed dating. Chairs were set up opposite one another. On one side people stayed in their seats and on the other side they moved over a chair every three minutes. We gave them a list of questions they could ask one another if they were shy. It worked so well that it sort of fell apart at the end because everyone was talking to each other. Since that was the point I didn't see it as a bad thing. After a few ice breakers we have also started doing a team building exercise. That has been a hit. Last year our conference theme centered around a cruise ship theme. Attendees were divided into teams and given a bag of odds and ends such as scrap fabric pieces, safety pins, ribbon, feathers etc. They were then told to choose a model in the group and create an outfit to wear on a cruise. The creations were a riot! This year we had a wizard of Oz theme. Teams were given materials to make scarecrows. The challenge was half the team was blindfolded. The team members wearing the blindfolds built the scarecrows. The team members without were not allowed to touch the materials but instead had to give instructions to help the people wearing blindfolds. These have been great to illustrate it takes a team to find a cure. It also gets attendees talking to each other quickly about something fun and not too scary. A bonus was using the scarecrows as decorations at our dinner.

*This year we started a private Facebook group for conference attendees and got the excitement started before the retreat. The last couple of years we made the first night a superhero theme so kids would make crafts while parents mingle (during embassy suites happy hour reception) and the superhero costumes and princesses came to surprise the kids and take pictures. We have assigned seating at dinner (so new families are sitting with seasoned families) and have a slide show with the pics of the kids/families from each table as the microphone is passed for family introductions. . The slide show has cute little superhero graphics added to it.

==Use of Breakout Sessions==

It seems to me that giving a specific task is always good, but only if that task reflects the collective needs of the group. I would recommend that you use one of the following approaches:

:Survey attendees ahead of time to find out what they think are some of the barriers and then schedule focused working groups around those topics. Send out a background document ahead of time detailing the responses to the survey and giving people some information so that they’ll come to the meeting prepared OR plan talks for that morning so that they give people background on those issues.

:Organize the morning presentations as panels with a lot of discussion. Make one of the goals of the morning to identify major barriers. Then have a planning group (a few people from the morning presentations) meet to come up with specific breakout questions. Have those same individuals serve as facilitators for those groups (so that they clearly understand the context of why they were chosen).

:Make the breakouts longer and use the first 30 minutes or so to establish shared challenges. Then have the group pick one shared challenge to focus on. It is important for this type of breakout that you have someone facilitating and someone paying close attention to time, since you have to make a transition from general to specific.

Also, consider using activities to help determine priorities for your community. For instance, I organized one session at the conference (that received very positive feedback) for which I used the following format:

*One, overarching 10 minute presentation to give context
*Short 5 minute presentations (these could be examples of actual research projects that have failed or overall presentations of barriers)
*Break the group into small teams (those sitting around them, 4-5 people max) to come up with solutions in 30 minutes
*One person from each group presents those solutions
*Each individual votes on priorities (this was specific to funding for our session, but could also be used for organizational priorities or something similar).

==Tips for Managing the Timeline==

#Start planning your conference 12 to 14 months before the date.
#Book the site 12 to 14 months in advance.
#Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
#From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
#Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
#Mail registration forms about six to eight weeks before the registration deadline, but prepare to receive the majority of registrations just after the deadline date.
#As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
#Finalize the conference agenda as the registrations are coming in.
#As your registrations are coming in, prepare packets for your attendees.

Careful preparation means more time—and energy—to put out the inevitable last-minute fires!

==Site Selection==

Are your members clustered in one area? How close is your organization's location to the majority of members? What people resources do you have for the nitty-gritty of planning and working with the conference site?

What are your space requirements? You've already decided whether you need a church basement or a hotel; do you need multiple rooms for concurrent sessions? For exhibitors? For socializing?

==Tips for Site Selection==

#The number of people interested is the biggest factor in establishing the scope and location of your meeting.
#Hotel rates should be around $100.00 a night.
#Does the site you are considering have an indoor pool? An area where families can socialize?

For conferences in which your organization is expecting a smaller crowd, there are places the conference could be held that may be less costly than a hotel. One such venue could be faith-based or non-profit related organizations that have conference centers that are available for other organizations to use for a short period of time. [http://www.younglife.org/Camping/Pages/RetreatsAndConferenceUse.aspx Young Life] is an option for this. Furthermore, your organization may want to consider state parks, or university-owned meeting space or property, for example [https://www.bradwoods.org/facilities/meeting-spaces/ Bradford Woods].

==Virtual Conferences==
Virtual conferences have popped up over the last several years for many reasons, including a global health pandemic in 2020. Here are some tips and points to consider from those who have trialed this new format:

* To charge or not to charge - While your organization won't have many of the typical expenses (meeting room rental, food, etc.), there still certainly are costs for the meeting. Many have found that charging at least a nominal fee makes it more likely that participants who commit will actually attend.
* Schedule/format - It may be harder for folks to dedicate three or four straight days to a conference from home while also juggling other responsibilities. However, for some it may still be easier to have the meeting in a compact format to help with child care arrangements, etc.
** Depending on the audience your meeting usually draws (from all local to from around the world), you will also need to give consideration to time zones at play.
** Consider building in breaks, especially if you are going to keep it at a limited number of days with longer sessions.
** Record the sessions for viewing later for those whom the date/time doesn't work as well.
* Meeting platforms - There are many options to choose from! One group specifically mentioned that Zoom worked well.

You'll ultimately have to decide what's right for your audience.

Here are some examples:

--The Family Voices Leadership in Family Professional Partnerships conference was 1 workshop, 2 afternoons a week for 5 weeks. There was no charge as the cost was covered by the cooperative agreement.

--The National Parent Center Capacity Building Conference will be three afternoons (2 slots per afternoon with 6-7 workshops per slot for a total of around 40 workshops) over three consecutive weeks. There is a $50 charge per parent center but then they can register as many people as they want.

--The National Federation of Families for Children's Mental Health conference will be a Tuesday and Thursday afternoon with a plenary session, 15 or so workshops, and a town hall. The cost will be $50/person but $45/person for a group of 10 or more.

--One disease-specific organization is planning to run two back to back weekend days starting at different times to better accommodate their members around the world.

--Another shared the following: "We dialed way back from a five day in-person experience to five virtual sessions on the topics most requested by families. They were each 90 minutes long , both single speakers and panels. We ran them live either morning or evening and then edited them and repeated in the alternate time slot, as we are international and needed to cover Europe and Australia. We chose Wednesdays, 11:00 am and 7:00pm Eastern. We did some polling to get a sense of the logistics."

--Our event is two days. We are charging $25 for members and $50 for non members, $50 for professionals.

We wanted to make it affordable but also wanted to be able to cover or help cover the cost of the tech needs. We are also charging $10 for a optional swag bag of 5p- merchandise including a specially designed mask.

--We made the hours much shorter than our typical two-day conference. The conference was over a weekend concentrated in the middle of the day but was open for a full week so those who could not attend over the weekend, or were in a conflicting time zone. We did not charge. We did not want any barriers to attending in the time of COVID-19 and expected people in a variety of financial situations to register. People joined us from 33 countries. We had funding for the conference from sponsors so this was not a hardship for us as the organizers.

==After the Conference==

*Send thank-you notes to all the volunteers, speakers, contributors, vendors, and other people who participated in the conference. Additional ways to show appreciation to conference speakers includes: giving the speakers a bag or t-shirt with the organization's logo, a plaque, or some other small gift such as gourmet popcorn.
*Send thank-you notes and evaluation forms to the attendees.
*Did you realize in hindsight that you should have done something differently? Write it down!

==Internal Links==

*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

State Registration

2018-04-15T16:41:12Z

Akrokosky: /* Companies Providing Registration Services */

== Charitable State Registration ==

[http://www.nasconet.org/ National Association of State Charity Officials]

The majority of states require registration of organizations that plan to solicit charitable contributions there. The above site provides links to the state offices for each state and the District of Columbia that regulate charitable organizations and charitable solicitations.

[http://multistatefiling.org/ Multi-state Filing/The Unified Registration Statement]

Most states (35 of the 39 that require registration) allow the use of the Unified Registration Statement (URS). Organizations must still file with each state, but the URS can be used instead of many separate forms.

It is advisable to call each state's contact person (listed on the site) to ensure that the information for that state is up to date before filing.

== Pros and Cons ==
The following information was taken from the [http://www.cafamily.org.uk/advice-and-support/resource-library/?k=Group+Action+Packk&f=all&n=all&l=all Contact a Group Family Action Pack], a guide published in the United Kingdom, but many of the factors described are applicable to and/or have equivalents to charitable registration in the United States, as well:

'''ADVANTAGES OF REGISTRATION'''
*Relief from income tax for income derived from investments (e.g. property, shares, and securities) where the income is applied for charitable purposes.
*Many charitable trusts and foundations as well as some businesses and corporations will only give to registered charities.
*The public perceives registered charities as being more credible than organisations which are not registered. This may assist you in fundraising.

'''DISADVANTAGES OF REGISTRATION'''
*Once registered the group will be required to complete more paperwork. You will need to send annual updates to the Charity Commission. Most groups will also be required to hold Annual General Meetings.
*Charity trustees may not generally benefit personally, whether through receipt of a salary or of profits or otherwise.
*Trustees can be held personally liable for misuse of funds.
*The objects of a charity must be exclusively charitable. They cannot, except in certain circumstances, carry out or fund activities or undertake permanent trading which falls outside those objects.
*You will need a membership system for the group which people will have to actively sign up to.

These are some of the issues which you need to consider before you make a decision. It often comes down to the trade off between ongoing bureaucracy versus lack of status (with potential donors and suppliers).

== Companies Providing Registration Services ==

[https://www.charitycompliancesolutions.com/ Charity Compliance Solutions] - We have used Charity Compliance Solutions for years and they have been great! I never even have to think about our filings. They are seamless.

[http://www.copilevitz-canter.com/ Copilevitz & Canter, LLC]

[http://www.labyrinthinc.com/ Labyrinth, Inc.]

[http://www.perlmanandperlman.com/ Perlman & Perlman]

==Internal Links==
*[[Advocacy Organizations List]]
*[[Advocacy Resources]]
*[[Assistive Technology]]
*[[BioBanks]]
*[[Blogging]]
*[[Children's Hopes and Dreams Foundations]]
*[[Consumer Medical Information]]
*[[Emergency Preparedness]]
*[[Fundraising]]
*[[Fundraising Appeals]]
*[[General Resources]]
*[[Information about Rare Genetic Diseases]]
*[[Matching Resources]]
*[[Meet Your Neighbors & Organizations]]
*[[Publications]]
*[[Resources for Nonprofits]]
*[[Sibling Support]]
*[[Travel]]

State Registration

2018-04-15T16:40:51Z

Akrokosky: /* Companies Providing Registration Services */

== Charitable State Registration ==

[http://www.nasconet.org/ National Association of State Charity Officials]

The majority of states require registration of organizations that plan to solicit charitable contributions there. The above site provides links to the state offices for each state and the District of Columbia that regulate charitable organizations and charitable solicitations.

[http://multistatefiling.org/ Multi-state Filing/The Unified Registration Statement]

Most states (35 of the 39 that require registration) allow the use of the Unified Registration Statement (URS). Organizations must still file with each state, but the URS can be used instead of many separate forms.

It is advisable to call each state's contact person (listed on the site) to ensure that the information for that state is up to date before filing.

== Pros and Cons ==
The following information was taken from the [http://www.cafamily.org.uk/advice-and-support/resource-library/?k=Group+Action+Packk&f=all&n=all&l=all Contact a Group Family Action Pack], a guide published in the United Kingdom, but many of the factors described are applicable to and/or have equivalents to charitable registration in the United States, as well:

'''ADVANTAGES OF REGISTRATION'''
*Relief from income tax for income derived from investments (e.g. property, shares, and securities) where the income is applied for charitable purposes.
*Many charitable trusts and foundations as well as some businesses and corporations will only give to registered charities.
*The public perceives registered charities as being more credible than organisations which are not registered. This may assist you in fundraising.

'''DISADVANTAGES OF REGISTRATION'''
*Once registered the group will be required to complete more paperwork. You will need to send annual updates to the Charity Commission. Most groups will also be required to hold Annual General Meetings.
*Charity trustees may not generally benefit personally, whether through receipt of a salary or of profits or otherwise.
*Trustees can be held personally liable for misuse of funds.
*The objects of a charity must be exclusively charitable. They cannot, except in certain circumstances, carry out or fund activities or undertake permanent trading which falls outside those objects.
*You will need a membership system for the group which people will have to actively sign up to.

These are some of the issues which you need to consider before you make a decision. It often comes down to the trade off between ongoing bureaucracy versus lack of status (with potential donors and suppliers).

== Companies Providing Registration Services ==

[http://www.copilevitz-canter.com/ Copilevitz & Canter, LLC]

[https://www.charitycompliancesolutions.com/ Charity Compliance Solutions] - We have used Charity Compliance Solutions for years and they have been great! I never even have to think about our filings. They are seamless.

[http://www.labyrinthinc.com/ Labyrinth, Inc.]

[http://www.perlmanandperlman.com/ Perlman & Perlman]

==Internal Links==
*[[Advocacy Organizations List]]
*[[Advocacy Resources]]
*[[Assistive Technology]]
*[[BioBanks]]
*[[Blogging]]
*[[Children's Hopes and Dreams Foundations]]
*[[Consumer Medical Information]]
*[[Emergency Preparedness]]
*[[Fundraising]]
*[[Fundraising Appeals]]
*[[General Resources]]
*[[Information about Rare Genetic Diseases]]
*[[Matching Resources]]
*[[Meet Your Neighbors & Organizations]]
*[[Publications]]
*[[Resources for Nonprofits]]
*[[Sibling Support]]
*[[Travel]]

Social Networking

2018-04-15T16:25:58Z

Akrokosky: /* SmartPatients */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. This [http://www.connectioncafe.com/posts/2009/february/things-to-do-in-facebook.html article] also discusses how non-profits can begin to use Facebook in general. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

To become Causes NonProfit Partner, visit [http://nten.org/uploads/09ntc/presentations/Welcome%20to%20Causes%20NPO.pdf here]. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use MultipleSocial Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-04-15T16:24:48Z

Akrokosky: /* SmartPatients */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. This [http://www.connectioncafe.com/posts/2009/february/things-to-do-in-facebook.html article] also discusses how non-profits can begin to use Facebook in general. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

To become Causes NonProfit Partner, visit [http://nten.org/uploads/09ntc/presentations/Welcome%20to%20Causes%20NPO.pdf here]. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions.

It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply.

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use MultipleSocial Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-04-15T16:23:30Z

Akrokosky:

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. This [http://www.connectioncafe.com/posts/2009/february/things-to-do-in-facebook.html article] also discusses how non-profits can begin to use Facebook in general. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

To become Causes NonProfit Partner, visit [http://nten.org/uploads/09ntc/presentations/Welcome%20to%20Causes%20NPO.pdf here]. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions.

It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply.

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use MultipleSocial Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-04-15T16:22:10Z

Akrokosky: /* Where do I start? */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. This [http://www.connectioncafe.com/posts/2009/february/things-to-do-in-facebook.html article] also discusses how non-profits can begin to use Facebook in general. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

To become Causes NonProfit Partner, visit [http://nten.org/uploads/09ntc/presentations/Welcome%20to%20Causes%20NPO.pdf here]. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use MultipleSocial Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-04-15T16:18:37Z

Akrokosky: /* Facebook */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. This [http://www.connectioncafe.com/posts/2009/february/things-to-do-in-facebook.html article] also discusses how non-profits can begin to use Facebook in general. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

To become Causes NonProfit Partner, visit [http://nten.org/uploads/09ntc/presentations/Welcome%20to%20Causes%20NPO.pdf here]. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use MultipleSocial Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-04-15T16:16:12Z

Akrokosky: /* Facebook */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. This [http://www.connectioncafe.com/posts/2009/february/things-to-do-in-facebook.html article] also discusses how non-profits can begin to use Facebook in general. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

To become Causes NonProfit Partner, visit [http://nten.org/uploads/09ntc/presentations/Welcome%20to%20Causes%20NPO.pdf here]. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use MultipleSocial Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-04-15T16:12:49Z

Akrokosky: /* Facebook */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. This [http://www.connectioncafe.com/posts/2009/february/things-to-do-in-facebook.html article] also discusses how non-profits can begin to use Facebook in general. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

To become Causes NonProfit Partner, visit [http://nten.org/uploads/09ntc/presentations/Welcome%20to%20Causes%20NPO.pdf here]. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues.

I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use MultipleSocial Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-04-15T16:09:47Z

Akrokosky: /* Facebook */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. This [http://www.connectioncafe.com/posts/2009/february/things-to-do-in-facebook.html article] also discusses how non-profits can begin to use Facebook in general. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

To become Causes NonProfit Partner, visit [http://nten.org/uploads/09ntc/presentations/Welcome%20to%20Causes%20NPO.pdf here]. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use MultipleSocial Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Childcare

2018-04-15T15:46:32Z

Akrokosky: /* Sources of Child Caregivers */

== Childcare for Conference Attendees ==

Many of our organizations organize Family Conferences where both affected an unaffected children are invited. Sometimes the affected individuals are teens and adults as well. The purpose of a Family Conference is usually contains at least the following two goals ... a time of learning for the adults/parents and a social/fellowship time where the families get to know each other and their affected family members.

Caring for "normal" children at a Family Conference creates its own set of logistical, care, safety, facility, and liability issues. When affected children are put into the mix this becomes even more complicated ... but ... as any of you who have met a family and their affected children know, it is well worth the effort for the family and those who meet them.

This wiki page is a collective of ideas and experiences. Please learn from it and add to it. Feel free to add comments to suggestions that others post, too!

As you read these suggestions please consider that often a balance of various types of individuals is best.

== Considerations When Organizing Child Care ==

* The needs of the active non-affected children are different than those of the affected children.
* Prepare a set of written guidelines for parents ... feeding, diapering, care during breaks, location, etc.
* Prepare a written release for the parents covering the child care worker, the facility and your organization.
* Always have more than one worker in case one needs to handle an emergency. Never leave the kids alone.
* Make sure that you have crafts, projects, games, toys, and if space allows a movie.
* Do you need snacks?
* How about a quiet corner with a rollaway or two?
* Do the child care workers know where you are at all times?
* Use name badges for all workers and all children.

== Sources of Child Caregivers ==

'''Student Program'''
As an advocacy organization it is our goal to educate those who serve our members. One way that we do this is through our Student Program. During our biennial research & awareness conference, IMDSA invites Genetic Counseling students to sit with our family's children and entertain them throughout the weekend. For a list of genetic counseling programs and their locations, visit the [http://www.nsgc.org/career/trainingprogram.cfm?what=showall National Society of Genetic Counselors].

This enables the families to enjoy the workshops and gain information from them without interuptions. It enables the children to have a good time and make new friends. But, more importantly, it enables the Genetic Counseling students a hands-on weekend with our kids so that they better understand what mosaic Down syndrome really is. This will further their professional life and also help them to diagnose those cases of mosaic Down syndrome that are hard to diagnose.

In exchange for their services, we offer the students to sit in on any workshops they choose at no cost to them. This also will further their understanding on mosaic Down syndrome.

About nine months before our conference we contact the facility in the area that houses Genetic Counseling students. We send out an invitation explaining the program and invite one student to be the head of the program. The "head" student will help with the scheduling and activities for the children. This person works closely with the conference committee and reports on a monthly basis.

The MLD Foundation also contacts local nursing schools in a similar fashion. Students studying speech therapy, occupational therapy, physical therapy, or education may be other resources to consider if there is not a genetic counseling program near by.

'''Local Churches & Similar Organizations'''
The MLD Foundation has been successful in using local churches to be ''part'' of the team - especially for the non-affected children. We contact MLD affected families in the area and ask them about their local church's child care team. We ask them to ask about providing some assistance - when a local family asks it usually carries more impact.

We also contact local Young Life chapters as these usually consist of well-mannered, enthusiastic, empathetic, and responsible college age youth.

'''Volunteers'''
Having volunteers is another way to provide specialized child care to conference goers. They are potentially a good way to grant highly specialized care and attention to the children, but the size of the conference and the exact needs of the child group may be limiting factors. Liability is also something that needs to be carefully worked out with volunteers, in case of emergency. Scheduling is also of vital importance, as volunteers might have very specific timeframes in mind, and the duration of the conference needs to be covered.

'''Family Voices'''
Your local chapter of [http://familyvoices.org/ Family Voices] will serve as a good resource.

'''Professional Student Organizations'''
You may wish to try enlisting the aide of some of the profession student organizations from ASHA, American Speech and Language Association, AOTA, American Occupational Therapy Association and APTA, American Physical Therapy Association along with groups from special education and child life programs. This could be a good fit because many of these students might have already completed their clinical training, and are often certified in emergency response as well. When planning for this option, it's good to have details like the time and dates the care will be needed finalized.

''[http://www.easterseals.com/site/PageServer?pagename=ntl_cdc_main Easter Seals]''
is a disability advocacy and support organization that offers extensive children's services. Groups have had success arranging conference childcare by meeting with representatives of their office.

'''Specific Companies Previously Used'''

* Kiddie Corps - "We used KiddieCorp (has insurance) in 2011 and 2015. KiddieCorp required 2 hotel rooms for managers."
* [http://www.accentoca.com/ Accent on Childcare] - "They were called on short notice and did a wonderful job! Great activities, very organized.....can't say enough." - "We have used Kiddie Corp for the last 2 conferences and that has been fairly successful. They are an expensive company and we are wondering if any other groups have used other companies."
* [http://www.popinnanny.com The Pop In Nanny Agency] - "They were about 1/2 the price of the other childcare companies that have been discussed (see above). They provide plenty of basic games, toys and activities for the kids."
* [http://americorps.org AmeriCorps.] "Free and great service."
* Kids Nite Out - Orlando, FL - "The kids came running up to me telling me how much they wanted to go back to childcare. They had a blast." - "They gave us a base cost on the amount of kids rather than the more expensive hourly rate." " We used Kids Nite Out in 2013 (they carry no insurance so rates are lower)"
* [http://www.conferencechildcare.com Corporate Kids] - "We use Corporate Kids and LOVE them! It has been the best financial investment we have made in regards to our conference." - "We hired Corporate Kids Events for our last National Family Conference and they were wonderful!" "n 2017 we used Corporate Kids (has insurance) which I think is by far the best company we used, and the most expensive. The rates depend on number of hours and number of children. Corporate Kids only required one hotel room for the one manager they sent. Corporate Kids also does crafts and you can pick a theme that matches your conference theme. "
* [http://svdc.org/ Single Volunteers of DC] - Washington, DC - "Not a childcare agency, but rather a group of volunteers. They were awesome - truly, and worked out perfectly for our needs."

Drug Development

2018-04-08T18:24:08Z

Akrokosky: /* Resources */

'''Externally Led Patient Focused Drug Development Meeting - Experiences from Groups'''

*''Friedreich’s Ataxia Research Alliance''

FARA has hosted an ELPFDD as a stand alone meeting, held a reception the night prior and a board meeting following the ELPFDD. FARA leadership felt the merit of the ELPFDD was important and sufficient to stand on its own. A great deal of time and attention was given to identify appropriate panelists and in preparing panelists for their role in this meeting. Preparation was also provided to members of the audience who wished to make statements. The meeting was described by Ron Bartek as monumental in building relationships with the FDA and in providing insights about Friedreich's ataxia from the patient's perspective. The group hired a consultant. Participation was not restricted to US residents. Anyone from anywhere was included. Many members of the community joined remotely. All responses provided via cell phone were tallied together and responses feedback to all regardless of whether the participant was attending the face-to-face meeting or joining online.

*''Genetic Alliance''

Genetic Alliance led ELPFDD for 3 diseases using the Platform for Engaging Everyone Responsibly (PEER) system. Some communities use PEER for registries, some for campaigns and some for trials. The six disease groups (including three orgs representing sickle cell disease) developed videos and copy placed on GA portal. Tablets were used by volunteers in infusion clinics to get people’s preferences. These three groups were selected to be included in the first phase of the FDA Patient Focused Drug Development.

*''Tuberous Sclerosis Alliance ''
Hosted a ELPFDD, see resources provided below.

*''Organic Acidemia Association'' and ''XLH Network'' are currently planning a ELPFDD meeting.

== Externally Led Patient Focused Drug Development Resource Links ==

[http://www.porphyriafoundation.com/content/fda-meeting-acute-porphyrias-march-1st-0 Acute Porphyrias]

[http://www.arci.org/fda-page/ Amyloidosis]

[https://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm453856.htm FDA]

[http://www.curefa.org/pdf/research/CoverPage-VOP-Report.pdf Friedreich's Ataxia (FA)]

[http://www.curefa.org/news/friedreich-s-ataxia-voice-of-the-patient-report Friedreich's Ataxia (FA)#2]

[https://globalgenes.org/fdaworkshop Global Genes]

[https://www.sweathelp.org/taking-action/patient-focused-drug-development.html Hyperhidrosis]

[https://lupuspfdd.org/ Lupus]

[http://www.myotonic.org/developing-therapies-brain-related-dm-symptoms-add-your-voice Myotonic Dystrophy]

[https://www.kidney.org/sites/default/files/C3G-PFDD-Agenda_FINAL.pdf CG3, National Kidney Foundation]

[https://www.arthritis.org/Documents/Sections/Advocate/Regulatory-Letters/AF-Comments-FDA-PDUFA-VI-Comittment-Letter.pdf Osteoarthritis]

[http://www.curesma.org/news/sma-voice-of-the-patient.html?referrer=https://www.google.com/ Spinal Muscular Atrophy]

[http://www.tsalliance.org/individuals-families/patient-focused-drug-development/ Tuberous Sclerosis ]

Drug Development

2018-04-08T18:14:52Z

Akrokosky:

'''Externally Led Patient Focused Drug Development Meeting - Experiences from Groups'''

*''Friedreich’s Ataxia Research Alliance''

FARA has hosted an ELPFDD as a stand alone meeting, held a reception the night prior and a board meeting following the ELPFDD. FARA leadership felt the merit of the ELPFDD was important and sufficient to stand on its own. A great deal of time and attention was given to identify appropriate panelists and in preparing panelists for their role in this meeting. Preparation was also provided to members of the audience who wished to make statements. The meeting was described by Ron Bartek as monumental in building relationships with the FDA and in providing insights about Friedreich's ataxia from the patient's perspective. The group hired a consultant. Participation was not restricted to US residents. Anyone from anywhere was included. Many members of the community joined remotely. All responses provided via cell phone were tallied together and responses feedback to all regardless of whether the participant was attending the face-to-face meeting or joining online.

*''Genetic Alliance''

Genetic Alliance led ELPFDD for 3 diseases using the Platform for Engaging Everyone Responsibly (PEER) system. Some communities use PEER for registries, some for campaigns and some for trials. The six disease groups (including three orgs representing sickle cell disease) developed videos and copy placed on GA portal. Tablets were used by volunteers in infusion clinics to get people’s preferences. These three groups were selected to be included in the first phase of the FDA Patient Focused Drug Development.

*''Tuberous Sclerosis Alliance ''
Hosted a ELPFDD, see resources provided below.

*''Organic Acidemia Association'' and ''XLH Network'' are currently planning a ELPFDD meeting.

== Resources ==
[https://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm453856.htm FDA]

[http://www.example.com link title]

Global Genes

https://globalgenes.org/fdaworkshop

Amyloidosis

http://www.arci.org/fda-page/

Myotonic Dystrophy

http://www.myotonic.org/developing-therapies-brain-related-dm-symptoms-add-your-voice

Acute Porphyrias

http://www.porphyriafoundation.com/content/fda-meeting-acute-porphyrias-march-1st-0

Osteoarthritis

https://www.arthritis.org/Documents/Sections/Advocate/Regulatory-Letters/AF-Comments-FDA-PDUFA-VI-Comittment-Letter.pdf

Spinal Muscular Atrophy

http://www.curesma.org/news/sma-voice-of-the-patient.html?referrer=https://www.google.com/

Friedreich's Ataxia (FA)

http://www.curefa.org/pdf/research/CoverPage-VOP-Report.pdf

http://www.curefa.org/news/friedreich-s-ataxia-voice-of-the-patient-report

Tuberous Sclerosis

http://www.tsalliance.org/individuals-families/patient-focused-drug-development/

CG3, National Kidney Foundation

https://www.kidney.org/sites/default/files/C3G-PFDD-Agenda_FINAL.pdf

Lupus

https://lupuspfdd.org/

Hyperhidrosis

https://www.sweathelp.org/taking-action/patient-focused-drug-development.html

Drug Development

2018-04-08T18:12:55Z

Akrokosky:

'''Externally Led Patient Focused Drug Development Meeting - Experiences from Groups'''

*''Friedreich’s Ataxia Research Alliance''

FARA has hosted an ELPFDD as a stand alone meeting, held a reception the night prior and a board meeting following the ELPFDD. FARA leadership felt the merit of the ELPFDD was important and sufficient to stand on its own. A great deal of time and attention was given to identify appropriate panelists and in preparing panelists for their role in this meeting. Preparation was also provided to members of the audience who wished to make statements. The meeting was described by Ron Bartek as monumental in building relationships with the FDA and in providing insights about Friedreich's ataxia from the patient's perspective. The group hired a consultant. Participation was not restricted to US residents. Anyone from anywhere was included. Many members of the community joined remotely. All responses provided via cell phone were tallied together and responses feedback to all regardless of whether the participant was attending the face-to-face meeting or joining online.

*''Genetic Alliance''

Genetic Alliance led ELPFDD for 3 diseases using the Platform for Engaging Everyone Responsibly (PEER) system. Some communities use PEER for registries, some for campaigns and some for trials. The six disease groups (including three orgs representing sickle cell disease) developed videos and copy placed on GA portal. Tablets were used by volunteers in infusion clinics to get people’s preferences. These three groups were selected to be included in the first phase of the FDA Patient Focused Drug Development.

*''Tuberous Sclerosis Alliance ''
Hosted a ELPFDD, see resources provided below.

*''Organic Acidemia Association'' and ''XLH Network'' are currently planning a ELPFDD meeting.

== Resources ==
[[FDA: https://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm453856.htm]]

Global Genes

https://globalgenes.org/fdaworkshop

Amyloidosis

http://www.arci.org/fda-page/

Myotonic Dystrophy

http://www.myotonic.org/developing-therapies-brain-related-dm-symptoms-add-your-voice

Acute Porphyrias

http://www.porphyriafoundation.com/content/fda-meeting-acute-porphyrias-march-1st-0

Osteoarthritis

https://www.arthritis.org/Documents/Sections/Advocate/Regulatory-Letters/AF-Comments-FDA-PDUFA-VI-Comittment-Letter.pdf

Spinal Muscular Atrophy

http://www.curesma.org/news/sma-voice-of-the-patient.html?referrer=https://www.google.com/

Friedreich's Ataxia (FA)

http://www.curefa.org/pdf/research/CoverPage-VOP-Report.pdf

http://www.curefa.org/news/friedreich-s-ataxia-voice-of-the-patient-report

Tuberous Sclerosis

http://www.tsalliance.org/individuals-families/patient-focused-drug-development/

CG3, National Kidney Foundation

https://www.kidney.org/sites/default/files/C3G-PFDD-Agenda_FINAL.pdf

Lupus

https://lupuspfdd.org/

Hyperhidrosis

https://www.sweathelp.org/taking-action/patient-focused-drug-development.html

Drug Development

2018-04-08T18:10:38Z

Akrokosky:

Drug Development

2018-04-08T18:08:40Z

Akrokosky:

Drug Development

2018-04-08T18:04:59Z

Akrokosky: Created page with "'''Externally Led Patient Focused Drug Development Meeting - Experiences from Groups''' *''Friedreich’s Ataxia Research Alliance'' FARA has hosted an ELPFDD as a stand al..."

Functions of Advocacy Organization

2018-04-08T18:01:37Z

Akrokosky: /* Research */

An advocacy organization can have a variety of functions, from an informal network in which parents give each other moral support to a sophisticated formal organization, which uses media outlets, government agencies, legislative access, and research access to create a complete range of improvements for its target population.

The advocacy organization has functions in four major areas:

*'''Family''': An advocacy organization almost always has family support at the center of its mission. First and foremost, these organizations are founded to speed information on its way to the people who use it, by creating a network for sharing. This may be clinical information or the peer support of being able to reassure a parent with a newly diagnosed child that she is not alone.
*'''Public''': Advocacy organizations can provide a public face for a condition that may be poorly understood. Through careful use of media outlets and educational material, advocacy organizations can increase awareness of special needs, get "out there" to reach potential new members, and help enhance the quality of members' lives by relating their needs to other issues in the public eye.
*'''Providers/Researchers''': Advocacy organizations can improve medical care by helping providers understand the day-to-day realities of a condition and the actual needs of affected families. They can serve as a central resource for the entire spectrum of the disorder and a referral center for specialists. They can also provide researchers with access to affected individuals and their families while providing a measure of protection for the participants.
*'''Government''': Advocacy organizations can take a role in health care policy by helping members understand initiatives that are being proposed, proposing initiatives themselves, and mobilizing action where public comment is called for. They can also work with government agencies, such as Maternal and Child Health and the National Institutes of Health, to ensure that their members' needs are being served.

These functions can be grouped into four action areas:

*Support for individuals and families
*Education of organization members, professionals, and the public
*Research advocacy
*Legislative and policy advocacy

== Topics ==
==== Support ====
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Dealing with Death]]
*[[Autopsies and Tissue Collection]]

==== Education ====
*[[Education of Members, Providers, and the Public]]
*[[Starting Points for Planning Materials]]
*[[Newsletters and Bulletins]]
*[[Brochures and Fact Sheets]]
*[[Articles, Letters, and Other Media for Lay Publication]]
*[[Clinician- and Researcher-Focused Materials]]
*[[Press Kits]]
*[[Publisher Recommendations]]

==== Research ====
*[[Getting Needs onto the Research Agenda]]
*[[Educating Your Membership about Research]]
*[[Patient's Bill of Rights]]
*[[Genetic Privacy]]
*[[Promoting Research on a Condition]]
*[[Planning a Research Conference]]
*[[Funding Research by Others]]
*[[Barriers to Rare Disease Research]]
*[[Consumers and Researchers: Making It Work]]
*[[Benefits of Collaboration with Advocacy Organization Community]]
*[[Facilitating Quality Research]]
*[[Research Models]]
**[[Research Model 1: Recessive Disorder]]
**[[Research Model 2: Chromosomal Disorder]]
**[[Research Model 3: Dominant Disorder]]
*[[Blood and Tissue Banks]]
**[[Genetic Alliance BioBank]]
*[[Creating a Natural History Survey]]
*[[Drug Development]]

==== Advocacy ====
*[[Getting Your Needs on Government and Legislative Agendas]]
*[[National Institutes of Health (NIH)]]
*[[Councils and Other Advisory Bodies]]
*[[Getting an ICD-9 code added for your condition]]
*[[Legislative and Policy Advocacy]]

Building a Website

2017-08-13T23:58:58Z

Akrokosky: /* Factors to Consider */

Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot of cases, they can be a first or early source of information on genetic disorders. A well-designed website that gets a lot of traffic can be an enormous asset. There are no hard and fast standards as far as content. However, Genetic Alliance's Access to Credible Genetics Resources program has toolkits addressing this, and many universities also have suggestions and scales to rate resources.

==Tips Before You Start==

There are dozens of books and websites that discuss the best way to design a site for specific purposes, and some of the most important guidelines are these:

*Use images carefully, and pay attention to their size—they should load easily even using dial-up connections.
*By all means, use color as a design element, but for sections of the page where there are chunks of text, the most legible combination is black text on a white background.
*Consider accessibility issues—can a user with low vision using a voice browser understand the way information is presented on the page? How about a color-blind user?
*Avoid animations and movies. Animations distract users. Flash is a popular software for creating animated websites or serving miniature movies, but it has virtually no accessibility features for sensory-impaired individuals. Using these techniques on your organization's site will limit your audience and may detract from your website's purpose: to share information and link members.
*Keep it simple. The simpler your site is, the easier it is for your users—and for the people who update it.

==Making a Website==

===Web Site Hosting===

If your organization is interested in building your own web site, you'll need to choose an appropriate 'host.' In deciding what host to use, it's important to consider what components you want your site to have such as text and graphics only or extras such as a store or message boards? Other things to think about include: Does the host offer the following - mysql - for a database? PHP - for making dynamic websites? or Email accounts? How much bandwidth will you be allowed each month? How much storage will you have on the website host? How good is technical support? Is it by phone or email? How much will it cost per month?

Here are some companies that other organizations use:
*[http://www.GoDaddy.com GoDaddy] - "GoDaddy are OK but as a web host they are not one of the best or the most reliable.
One common problem is they make it very difficult for the customer to transfer domain names - The web address of your website to another web site host. Another big problem is spam.. and we all hate spam. Some customers have complained that there website name (domain name) is easy to use by hackers and spammers because they charge extra for privacy and security tools. Now don't get me wrong I am not saying don't go there, because they have a lot of happy customers, Just be careful."
*[http://www.webtrix.com Webtrix] - "Very reliable and helpful. Easy to get in contact with when you have questions."
*[http://www.datarealm.com/ Datarealm Internet Services] - "We have used Datarealm Internet Services for years and been very happy with them. I think their non-profit rate is about $49.75 for six months."
*[http://www.aspwebhosting.com ASP Webhosting]
*[http://www.rackspace.com Rackspace] - "I've found them responsive and their web interface is very easy to use. In addition, they have a lot of room for expansion and offer many backup options to keep your website up and running."

===Web Site Designers===

Many organizations are finding designers to build intricate sites for them, in order to provide sophisticated services like message boards and databases of resources for disorders. Hiring a web designer to do freelance work is a reasonable option for advocacy organizations, especially if there is not enough work or monetary resources to support a full time employee. In order to circumvent this problem, it might be possible for multiple orgs to hire a professional and give them work on a contractual basis so they would have a full workload. It would be also a great introduction for them into the non-profit sector. Another option is to ask volunteers to build and maintain the website. This could work for specific sites and orgs, but volunteers usually work on a very flexible schedules, and may not be able to respond to immediate website needs. Consistency is the important thing. It is extremely beneficial if the website is constructed with solid code and updates are made regularly.

Many web designers have websites, like this:
*http://www.yourgraphicsguy.com
*http://www.webtrix.com (Good for hosting and designing complex features like shopping carts, and you can do maintenance yourself.)
*http://www.kineticsolutionsservices.com/
*http://www.novelprojects.com/
*http://www.studio162.com

Here's a list of companies that other disease-specific organizations have used and approved of their work:

*[http://www.aimg.com Accurate Imaging]
*[http://www.cermack.com Cermack]
*[http://www.firespring.org/ Firespring] - One group said "The top selling points for us included their beautiful responsive design templates, their focus on nonprofits and integrated tools like email marketing, donor management and fundraising campaigns. I have only good things to say about this company. Their customer support is fantastic." And another added "We also started using Firespring just last year and we have gone from the expense of needing to use a professional Webmaster to add news and make adjustments to our site to now where a few of us are able to keep up with our site, add calendar events, News, and the latest research on HSP and PLS for our community. The system is really easy to work with and our costs have gone down dramatically."
*We hired a wonderful company called iFactory, based in Boston. Kimberly Emrick was our contact and she was outstanding. They developed a very good understanding of accessibility issues as well, since our agency worked with people who are deafblind.
*A wonderful digital partner, OneUpWeb (we’ll continue a long-term partnership with them). They truly sought to understand the needs of our genetic disease and patient community and we couldn’t be happier.
*I got and get help from Steve Shoffner at www.fefifolios.com. He mostly designs websites for artists. He guided me to learn enough so I can make changes and even take on some designing. At first he was concerned that he didn't know anything about what our organization does, but once I encouraged him that it's all the same in terms of information-sharing and user experience, we worked well together. For content, I had to do the heavy lifting and look at other examples, and think about how to organize the info. It's more work, but it costs less overall, and I'm empowered to keep it up-to-date. It was much less work than I thought it would be!

==Using a Content Management System==

Content Management Systems can be both a great help and a great hinderance in designing a web site. With some content management systems, groups find them to be inflexible and feel "trapped" in not being able to meet their needs, while other content managemen systems work well. Here are some tips from groups that use them:

*Joomla is a super system for developing a CMS website. Best of all it is free to use. It has a huge community of users, with a massive range and style of websites. The joy of setting up a website using it is that the site can be as simple or complex as you need, and the site can grow with you, by adding plug-ins and other tools to meet your needs. Lots of templates to get you going so if you find one you like, you can be up and running in under an hour. For a small website it can be a bit big, but on the whole it is great.

*A small site can be developed using WordPress, although normally used for blogging, Wordpress is a very powerful CMS tool. You can have a play with wordpress at no cost by going to [http://wordpress.com here]. You can sign up and create a site on the wordpress servers, and if it works for your needs, you can go to [http://wordpress.org here] to download a copy to install on your own server. It is also free.

*A few basic requirements you will need to check with your web hosting service no matter what CMS system you choose to use:
**Ask if you have PHP - version 5 is best but you can get away with a lowerversion numnber (not recomended though).
**Also you need a MYSQL Database on your hosting package.
**Your Hosting also needs to be on a LINUX server (Not a windows server.)
**If your hostimng meets the above requirements you are fine, otherwise for any free CMS you may need to switch or upgrade your web hosting package.

==Evaluating Your Site==
It is a good idea to evaluate your website every once in a while to see if it is functioning at its highest potential. There are some services out there that can help you with your evaluation.

WebXACT (formerly BOBBY) is a web-based service that checks sites for accessibility. It evaluates your site and lists recommendations to improve accessibility. You can ask it to use the World Wide Web Consortium Guidelines (available at W3.org) or [http://www.access-board.gov/sec508/e-learning.htm/Section 508 Guidelines].

W3 and Section 508 rules are for format. Consider guidelines for content, as well. We recommend [http://www.hon.ch/HONcode/Guidelines/guidelines.html] on the Net Foundation—Code of Conduct. This code has guidelines for authority, accountability, and attribution that form a solid basis not only for designing your site's approach to information but for evaluating other sites as well.

== Evaluating Resources ==
One of the main services advocacy organizations can offer through their print and electronic tools is providing quality and accurate information about a condition as well as helping people sort through health information found from various other sources.

Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the [http://www.trustortrash.org/developer ''Trust It or Trash It?''] tool.

Your members may have many places they find information other than your organization. Encourage them to use the [http://www.trustortrash.org ''Trust It or Trash It?''] tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more visit [http://www.youtube.com/geneticalliance#p/u/6/IKa7BlKpPZg Genetic Alliance's YouTube Channel].

==Factors to Consider==
*The complexity of the site design
*Resources available to the organization for site design
*The cost of professional site help
*The potential of the site for growth and change (especially complicated additions like message boards and shopping carts)
*Location! Prices for web design services tend to vary; they are generally higher near large cities.
*Some designers pay per page, and often prices vary based on the amount of coding that needs to be done.
*It is always worth writing to the CEO of the hosting company you like the look of. Often you may either get a good deal or an offer of free hosting.
*On the subject of domain names... A lot of nasty people may see your domain getting traffic and set up a copy cat advertising domain trading on the miss typing of the charity domain. They set up a single page advert site. It is worth investing in the main names for your site to avoid this situation and to protect your intellectual property.
*Make sure your website is accessible to those with visual impairments. You can use http://wave.webaim.org/ to help with an assessment.

 It's worth shopping around based on your organization's needs!

While on the topic of intellectual property rights, it is important to note that it is also possible for people to steal images that you post to your site. Thus, it is important to consider the possible measures that can be to taken to reduce or eliminate the likelihood this unfortunate circumstance could occur. Below are some thoughts on this, along with some mechanisms organizations utilized to keep their photos protected.

Jean Pickford

Foundation for Ichthyosis & Related Skin Types, Inc.

“ The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) represents patients with a very visible and disfiguring genetic skin disease. We have consented photos on our website that show the various forms of the disease, ranging from newborns to adults. There have been occasions when our photos have been copied from our website and posted on social media sites to gain attention/followers. In one case last year, a photo of a harlequin ichthyosis newborn was taken from our site and posted on Facebook, which went viral (i.e., one like = one prayer for this baby) with more than 2 million likes & more than 30,000 comments. Needless to say, some of the comments were nasty, like “this is a reptile baby” or “it’s an alien, put them out of their misery.”

Some of us here at FIRST feel very strongly that it is our duty to protect these photos from any exploitation on behalf of those we serve, and thus, they should be “watermarked.” However, others feel very strongly that a watermark detracts from the purpose of the photo in helping physicians, families, and others who are trying to learn about the disease.

In discussing it with some of our board members and web admins, we have added a “blocker” that pops up when you right click any photos on our site as well as a watermark on the images, so if they are taken without permission, they can’t be used. An example of this can be viewed at: [http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Harlequin-Ichthyosis/page_id/547 FIRST Harlequin Ichthyosis].”

Janet Long

US Hereditary Angioedema Center

“The website where we host our images is: [https://www.haeimages.com HaeImages]. With so many players in our “HAE space”, we found our web site images appearing in good places and bad. Therefore, we organized an image repository where patients could donate images and we could somewhat handle their use via the sale of them; the sales could in return support new research.

It has been as successful as I could have hoped, I think, in keeping our images safe.
However, there are still images taken from our web site (we did not watermark them, but instead trademarked the web site and this is usually enough to scare folks off from stealing….)”

“For the specific issue of a forum, some web development companies could be a good fit for advising on this. I'd strongly recommend finding a stable off the shelf solution rather than trying to roll your own unless you have mountains of money to throw at it. If you identify the product that you want to use, then sometimes the company that develops the product can recommend experienced implementation people.”

Christy Collins

M-CM Network

==Search Engine Optimization and Helping People Find Your Site==

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites.

===Generate A Keyword List===

The first thing to do is generate a list of keywords, or search terms, to target. This list may include all of the disease/syndrome names that your organization covers (including acronyms, abbreviations and variants), significant symptoms or signs, and anything else that a person might punch into a search engine when they are looking for the information that your site offers. You may want to survey some new members to see if they looked for you via search engine and if they remember what words they searched for. Once you have this list, sort it by relevance.

===HTML tags for SEO===

Important html tags for search engine optimization are fairly simple.
* The most important tag is <title>. The <title> tag doesn't actually appear on your web page, but rather in the top of your browser window. It will be used as the title of your search result listing on Google and the default title if your page is shared on Facebook.
* Next are heading tags: <pre><h1>, <h2>, <h3></pre> With h1 being the most important. Survey your site's content for places that you can sensibly fit your keywords into these tags.
* Set a meta description tag for the most important pages on your site and consider using your keywords here. Like the <title> tag, the description tag doesn't display on the site, but it has a lot of utility for other sites that parse your content. Besides search rank, Google uses it to display in it's search results. It is used on Facebook when your page is shared on a user's wall. This tag looks like: <pre><meta name="description" content="My page description." /></pre> Google will display the first 150 characters in the content attribute, you should try to keep the size of your description in that range.

===Incoming Links===

There is much nastiness on the internet due to the fact that incoming links boost search rank. Fortunately for many of us, our search terms are so obscure that we don't have a lot of competition for rank, and a little bit of effort with integrity should go a long way. The most important detail to know is that linking a keyword to your site will be much more powerful than linking a generic phrase like "click here" or "link".
Some simple suggestions:
- If you get media publicity, make sure that any internet version of the article correctly links to your site. If it doesn't, politely request that the link be added. A newspaper is not obligated to to do this, but it's worth asking.
- If you have affected families, fundraisers or board members who have their own blogs or websites, suggest ways that they could link to you if they are not already doing so. You may even want to offer badges that link to your site.

===Other Traffic===

* Facebook has potential for generating valuable traffic to your site, although most Facebook linking will not affect your Google search rank. Add Facebook "like" and "share" buttons to your site. Take a look at the default content that Facebook displays when a page on your site is shared to verify that it's accurate and helpful. This will consist of your <title> tag and meta description OR largest block of paragraph content if you don't have a meta description.
* Wikipedia links also do not contribute to search engine rank. However, when searching on medical terms and syndrome names, Wikipedia results often come up in the top three results. Make sure your organization is linked to from the links section of the wikipedia page/s for your disease. If your disease doesn't have a wikipedia page, make one.
* Be sure your disorder is listed on the appropriate databases, that the information is current and accurate and that your advocacy site is linked to. [[Information about Rare Genetic Diseases|Disease Databases]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Working Remotely

2017-08-13T23:55:32Z

Akrokosky:

Many advocacy organizations start as a like-minded group of individuals who are willing to volunteer large amounts of time and effort to improve the situation of those affected by a genetic condition. Because a large distance might separate those individuals, and because staff may have other obligations to manage, working remotely might be one of the most logical ways to connect an organization and accomplish tasks on the agenda.

If you have volunteers or staff working remotely, it is important to provide them the tools they need to complete their work and stay connected with the other staff members. If financial duties are part of the job description, make sure the remote staff member has access to the accounts and the means to work with them. If group members are collaborating on a project, there should be a timeline or schedule that everyone can access. There are many tools available!

==Communication Tools==
*[http://www.aim.com/ AIM] - AOL's instant messaging service provides free person-to-person text communication, chatroom messaging, and the ability to share files peer-to-peer

*[[Conference Call Services]] - Conference calls allow multiple people in different locations to participate in the same telephone call.

*[http://www.google.com/googlevoice/about.html Google Voice] - service that provides free computer-to-computer voice and video calls and free computer-to-phone calls in North America, the option to get one Google phone number to connect all of your phone numbers, and an automatic voicemail transcription service

*[https://www1.gotomeeting.com/?Portal=gotomeeting.com GoToMeeting] - online meeting-hosting service; participants can all view the desktop of one host computer

*[http://joinme.com join.me] - free screen-sharing and online meeting tool

*[http://www.skype.com/intl/en-us/home Skype] - service that provides free voice and video calls to other Skype users (including international users); additional features include instant messaging and file transfer

*Webinars - interactive web seminars; usually a live presentation in which a speaker presents information to an online audience who can then participate in the conference through chats, file shares, or computer microphones

==File Sharing Tools==
*[http://box.net Box.net] - file-sharing, content management, and collaboration service

*[http://www.dropbox.com/ Dropbox] - file hosting service that is useful for storing, sharing, and archiving files and folders; free up to 2GB with additional space available for a monthly fee

*[http://docs.google.com Google Documents] - free tool to create, edit, and share work online; documents, spreadsheets, presentations, drawings, and forms can all be created or uploaded, accessed anywhere, and shared in real-time

*Remote Servers - Remote servers allow employees working offsite to access the organization's files and folders. Storing files in a shared drive on a remote server allows these files to be accessed by anyone in the organization, whether or not they are in a main office. Oftentimes, an organization can put the shared area, password protected, on the server used to host this organization's website. A Remote Desktop Server is also useful, as it allows employees away from the office to access all of the applications and data on their office desktop as if they were physically sitting in front of it.

==Financial Tools==
*[https://www.bankofamerica.com/index.jsp Bank of America online] - allows complete account access, with a three dollar charge for transfers without a deposit ticket

*[http://docs.google.com/ Google Documents] - tool to create and share spreadsheets and word documents

*[http://quickbooksonline.intuit.com/ QuickBooks Online] - online accounting service

==Organizational Tools==
*[http://basecamphq.com/ Basecamp] - project collaboration tool that offers to-do lists, milestone management, file sharing, time tracking, and a messaging system

*[http://www.efax.com/?CMP=OTC-us e-fax] - service for sending faxes online

*[http://www.google.com/sites/help/intl/en/overview.html Google Sites] - easy way to create and share group websites for free; tools include file attachment, organizational calendars, etc.

*[http://www.huddle.net/ Huddle] - team collaboration and project management application; provides file sharing, document management, web conferencing, discussion boards, and more

*Wikis - service that allows the creation and editing of any number of interlinked web pages; often used to create collaborative works

*[http://www.zoho.com Zoho] - portfolio of more than twenty different online applications for businesses

==Recording and Uploading Tools==
*[http://www.boinx.com/boinxtv/overview/ BoinxTV] - tool to create recordings or live videos; allows one to combine live camera video, clips, photos, 3D graphics, lower thirds, audio, and more

*[http://www.apple.com/finalcutexpress/ Final Cut Express] - video editing tool

*[http://www.apple.com/quicktime/download/ QuickTime] - free tool that exports videos to the Internet; exporting with QuickTime creates a master file with three formats: iPhone (high bandwidth), low bandwidth, and desktop

It is useful when exporting videos to export both a Quicktime file and .WMV file (for Windows Media Player), so those without Quicktime can also watch. Once these files have been exported, add links online to both the master file and the .WMV file and upload them to the server.

==Scheduling Tools==
*[http://www.doodle.com/ Doodle] - tool to schedule group meetings efficiently

*[http://www.getklok.com/ Klok] - service to help keep track of time

*[http://www.timeanddate.com/worldclock/ World Clock's Time Converter] - useful site when planning meetings with contributors in multiple time zones

*[http://www.thetimenow.com/worldclock.php The Time Now] - another useful site to determine the time around the world that is also accessible for those with visual impairments

==Internal Links==
*[[Advisory Boards]]
*[[Bylaws and Articles]]
*[[Developing a Governance Board|Governance Board]]
*[[Finding a Lawyer]]
*[[Your Organization's Name Is Important|Organization's Name]]
*[[Staff]]
*[[Tax and Finance]]
*[[Working with a Lawyer]]

Audits

2016-12-14T01:56:23Z

Akrokosky: /* How Long Should it Take and What does it Cost? */

"Audit" means several things, the simplest of which is testing documentation or processes for accuracy and comprehensiveness against a report or a set of standards. The auditor examines materials and then issues an opinion as to whether what it has examined complied with what it is being tested against, and how well. Your organization will usually pay for an audit, and depending on the type and when it is requested, the preparer may also prepare financial documents for your organization, such as year-end statements and depreciation schedules.

Audits may not detect whether there is fraud in a system; they are only required to express an opinion as to whether the documentation presented gives a fair representation. An "unqualified" opinion is a statement that the organization is in compliance. A "qualified" opinion is a statement that lists issues that must be resolved before the organization is in compliance.

Your organization may be audited by an independent professional, such as a certified public accountant (CPA), or by a group to whom it reports, such as the IRS or an agency that wishes to review performance on a contract. Audits may focus on the degree to which your activities match a project plan or set of deliverable, or they may focus on accounting systems or other functions within the organization.

The federal government does not require that nonprofits have a financial audit by a CPA unless they receive funds above a threshold amount ($25,000, including "pass-through" funds, as through a state or local agency). Some states require annual audits if their revenues are above a threshold amount, and some states may accept a CPA "review" rather than an audit—this service is not as comprehensive as an audit but may cost only half as much to obtain.

Organizations that spend $300,000 or more in federal funds (including "pass-through" funds) in a year are required to have a CPA audit as described in the Office of Management and Budget's (OMB) Circular A-133.

OMB Circular A-133 is available at OMB's [http://www.whitehouse.gov/omb/circulars/a133/a133.html website]. The American Institute of Certified Public Accountants (AICPA) is an advocacy and standards body for CPAs, which publishes "generally accepted accounting principles."

==Why—and When—Should We Be Audited?==

When you meet federal or funder requirements for an audit.

Because you have had a "qualified" opinion on an audit in the past and wish to assess whether the issues have been resolved.

When you want to assess the financial management of your organization as part of an effort to strengthen it.

As a way to document, for the benefit of potential donors or funders, the strength and responsibility of your organization's financial management.

To qualify for specific sources of funding, such as the [http://www.opm.gov/cfc/ Combined Federal Campaign] or to join other organizations, such as the [http://www.nationalhealthcouncil.org/ National Health Council].

==How Long Should it Take and What does it Cost?==

An audit should never take a full year to conduct, especially for a tiny organization. Three months absolute tops.

One group's audits take approximately 2 months and they pay $7,000. Another group pays $6,500.

A cost-saving tip - We did change to a fiscal year which ends on 9/30 so that we could get better rates and availability of accountants.

Another potential cost-saving tip - What about asking a larger organization to be your fiscal agent for this event? The funds could go to them, you would pay them a small fiscal agent fee, which would be a lot less than the cost of an audit, and if they are a larger organization, they would already have an audit.
*A fiscal agent would be a good option assuming they are audited....BUT some grant funders won’t fund entities under fiscal agency.
**Fiscal agents take about 9% as an admin fee, and that may be the funders’ sticking point...if they object. In Colorado, there is a nonprofit “incubator” whose mission is to serve as fiscal agent for fledgling groups. The Colorado Nonprofit Development Center’s (www.cndc.org), only mission is fiscal agency. They charge 9%.9% also fits conveniently in most grants’ admin limits of 10%. I and several others launched a startup under CNDC, and we quickly discovered that a pitfall of fiscal agency is that most foundations would not entertain grant proposals from us.
*You might be able to get away with a “review” in lieu of a full audit. Shouldn’t hurt to ask.
*I’ve worked with [http://www.cpagg.com/ Guzman and Gray] for a number of years, a CA accounting firm, and they might be able to give you a good deal on a 990-EZ and a review.
*We've been pleased with [http://www.gggcpas.com/ Gray Gray & Gray] in NYC.
*Here’s another referral, by the way: http://www.bbdcpa.com/
*http://www.maillie.com/

==Internal Links==
*[[Setting up Useful Systems|Tax and Finance: Setting up Useful Systems]]
*[[Financial and Summary Statement|Tax and Finance: Financial and Summary Statement]]
*[[State-Specific Issues|Tax and Finance: State-Specific Issues]]
*[[Attaining 501(c)(3) Status (Not-For-Profit Determination)|Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)]]
*[[Accepting Donations|Tax and Finance: Accepting Donations]]
*[[Accountants|Tax and Finance: Accountants]]

Audits

2016-12-14T01:54:17Z

Akrokosky: /* How Long Should it Take and What does it Cost? */

"Audit" means several things, the simplest of which is testing documentation or processes for accuracy and comprehensiveness against a report or a set of standards. The auditor examines materials and then issues an opinion as to whether what it has examined complied with what it is being tested against, and how well. Your organization will usually pay for an audit, and depending on the type and when it is requested, the preparer may also prepare financial documents for your organization, such as year-end statements and depreciation schedules.

Audits may not detect whether there is fraud in a system; they are only required to express an opinion as to whether the documentation presented gives a fair representation. An "unqualified" opinion is a statement that the organization is in compliance. A "qualified" opinion is a statement that lists issues that must be resolved before the organization is in compliance.

Your organization may be audited by an independent professional, such as a certified public accountant (CPA), or by a group to whom it reports, such as the IRS or an agency that wishes to review performance on a contract. Audits may focus on the degree to which your activities match a project plan or set of deliverable, or they may focus on accounting systems or other functions within the organization.

The federal government does not require that nonprofits have a financial audit by a CPA unless they receive funds above a threshold amount ($25,000, including "pass-through" funds, as through a state or local agency). Some states require annual audits if their revenues are above a threshold amount, and some states may accept a CPA "review" rather than an audit—this service is not as comprehensive as an audit but may cost only half as much to obtain.

Organizations that spend $300,000 or more in federal funds (including "pass-through" funds) in a year are required to have a CPA audit as described in the Office of Management and Budget's (OMB) Circular A-133.

OMB Circular A-133 is available at OMB's [http://www.whitehouse.gov/omb/circulars/a133/a133.html website]. The American Institute of Certified Public Accountants (AICPA) is an advocacy and standards body for CPAs, which publishes "generally accepted accounting principles."

==Why—and When—Should We Be Audited?==

When you meet federal or funder requirements for an audit.

Because you have had a "qualified" opinion on an audit in the past and wish to assess whether the issues have been resolved.

When you want to assess the financial management of your organization as part of an effort to strengthen it.

As a way to document, for the benefit of potential donors or funders, the strength and responsibility of your organization's financial management.

To qualify for specific sources of funding, such as the [http://www.opm.gov/cfc/ Combined Federal Campaign] or to join other organizations, such as the [http://www.nationalhealthcouncil.org/ National Health Council].

==How Long Should it Take and What does it Cost?==

An audit should never take a full year to conduct, especially for a tiny organization. Three months absolute tops.

One group's audits take approximately 2 months and they pay $7,000. Another group pays $6,500.

A cost-saving tip - We did change to a fiscal year which ends on 9/30 so that we could get better rates and availability of accountants.

Another potential cost-saving tip - What about asking a larger organization to be your fiscal agent for this event? The funds could go to them, you would pay them a small fiscal agent fee, which would be a lot less than the cost of an audit, and if they are a larger organization, they would already have an audit.
*A fiscal agent would be a good option assuming they are audited....BUT some grant funders won’t fund entities under fiscal agency.
**Fiscal agents take about 9% as an admin fee, and that may be the funders’ sticking point...if they object. In Colorado, there is a nonprofit “incubator” whose mission is to serve as fiscal agent for fledgling groups. The Colorado Nonprofit Development Center’s (www.cndc.org), only mission is fiscal agency. They charge 9%.9% also fits conveniently in most grants’ admin limits of 10%. I and several others launched a startup under CNDC, and we quickly discovered that a pitfall of fiscal agency is that most foundations would not entertain grant proposals from us.
*You might be able to get away with a “review” in lieu of a full audit. Shouldn’t hurt to ask.
*I’ve worked with [http://www.cpagg.com/ Guzman and Gray] for a number of years, a CA accounting firm, and they might be able to give you a good deal on a 990-EZ and a review.
*We've been pleased with [http://www.gggcpas.com/ Gray Gray & Gray] in NYC.
*Here’s another referral, by the way: http://www.bbdcpa.com/

==Internal Links==
*[[Setting up Useful Systems|Tax and Finance: Setting up Useful Systems]]
*[[Financial and Summary Statement|Tax and Finance: Financial and Summary Statement]]
*[[State-Specific Issues|Tax and Finance: State-Specific Issues]]
*[[Attaining 501(c)(3) Status (Not-For-Profit Determination)|Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)]]
*[[Accepting Donations|Tax and Finance: Accepting Donations]]
*[[Accountants|Tax and Finance: Accountants]]

Audits

2016-12-14T01:49:44Z

Akrokosky: /* How Long Should it Take and What does it Cost? */

"Audit" means several things, the simplest of which is testing documentation or processes for accuracy and comprehensiveness against a report or a set of standards. The auditor examines materials and then issues an opinion as to whether what it has examined complied with what it is being tested against, and how well. Your organization will usually pay for an audit, and depending on the type and when it is requested, the preparer may also prepare financial documents for your organization, such as year-end statements and depreciation schedules.

Audits may not detect whether there is fraud in a system; they are only required to express an opinion as to whether the documentation presented gives a fair representation. An "unqualified" opinion is a statement that the organization is in compliance. A "qualified" opinion is a statement that lists issues that must be resolved before the organization is in compliance.

Your organization may be audited by an independent professional, such as a certified public accountant (CPA), or by a group to whom it reports, such as the IRS or an agency that wishes to review performance on a contract. Audits may focus on the degree to which your activities match a project plan or set of deliverable, or they may focus on accounting systems or other functions within the organization.

The federal government does not require that nonprofits have a financial audit by a CPA unless they receive funds above a threshold amount ($25,000, including "pass-through" funds, as through a state or local agency). Some states require annual audits if their revenues are above a threshold amount, and some states may accept a CPA "review" rather than an audit—this service is not as comprehensive as an audit but may cost only half as much to obtain.

Organizations that spend $300,000 or more in federal funds (including "pass-through" funds) in a year are required to have a CPA audit as described in the Office of Management and Budget's (OMB) Circular A-133.

OMB Circular A-133 is available at OMB's [http://www.whitehouse.gov/omb/circulars/a133/a133.html website]. The American Institute of Certified Public Accountants (AICPA) is an advocacy and standards body for CPAs, which publishes "generally accepted accounting principles."

==Why—and When—Should We Be Audited?==

When you meet federal or funder requirements for an audit.

Because you have had a "qualified" opinion on an audit in the past and wish to assess whether the issues have been resolved.

When you want to assess the financial management of your organization as part of an effort to strengthen it.

As a way to document, for the benefit of potential donors or funders, the strength and responsibility of your organization's financial management.

To qualify for specific sources of funding, such as the [http://www.opm.gov/cfc/ Combined Federal Campaign] or to join other organizations, such as the [http://www.nationalhealthcouncil.org/ National Health Council].

==How Long Should it Take and What does it Cost?==

An audit should never take a full year to conduct, especially for a tiny organization. Three months absolute tops.

One group's audits take approximately 2 months and they pay $7,000. Another group pays $6,500.

A cost-saving tip - We did change to a fiscal year which ends on 9/30 so that we could get better rates and availability of accountants.

Another potential cost-saving tip - What about asking a larger organization to be your fiscal agent for this event? The funds could go to them, you would pay them a small fiscal agent fee, which would be a lot less than the cost of an audit, and if they are a larger organization, they would already have an audit.
*A fiscal agent would be a good option assuming they are audited....BUT some grant funders won’t fund entities under fiscal agency.
**Fiscal agents take about 9% as an admin fee, and that may be the funders’ sticking point...if they object. In Colorado, there is a nonprofit “incubator” whose mission is to serve as fiscal agent for fledgling groups. The Colorado Nonprofit Development Center’s (www.cndc.org), only mission is fiscal agency. They charge 9%.9% also fits conveniently in most grants’ admin limits of 10%. I and several others launched a startup under CNDC, and we quickly discovered that a pitfall of fiscal agency is that most foundations would not entertain grant proposals from us.
*You might be able to get away with a “review” in lieu of a full audit. Shouldn’t hurt to ask.
*I’ve worked with [http://www.cpagg.com/ Guzman and Gray] for a number of years, a CA accounting firm, and they might be able to give you a good deal on a 990-EZ and a review.
*We've been pleased with [http://www.gggcpas.com/ Gray Gray & Gray] in NYC.

==Internal Links==
*[[Setting up Useful Systems|Tax and Finance: Setting up Useful Systems]]
*[[Financial and Summary Statement|Tax and Finance: Financial and Summary Statement]]
*[[State-Specific Issues|Tax and Finance: State-Specific Issues]]
*[[Attaining 501(c)(3) Status (Not-For-Profit Determination)|Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)]]
*[[Accepting Donations|Tax and Finance: Accepting Donations]]
*[[Accountants|Tax and Finance: Accountants]]

Conferences, Workshops, and Meetings for Affected Individuals

2016-08-30T23:48:13Z

Akrokosky:

Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of community. Creating these events involves two major tasks: determining the scope and objectives of your meeting, and doing the logistical planning for the event. You can read some examples of other conferences at our [[Setting Up A National Conference]] page.

==Determining the Scope and Objectives of Your Meeting==

Conferences include many sizes and types of events. They can be as simple as an afternoon session with a speaker followed by some social time, or as extensive as a lodgings-based multiday event with a mix of speakers and activities and with meals served on site. Consider these issues as you plan conferences:

*Your members' interests
*Your goals for serving your membership
*Costs
*Available resources

When creating a new conference, survey your members. Ask them what they want from a conference, how much time they would want to spend, how far they would be willing to travel. Ask them what they can afford, and get a sense of how many interested members would require financial assistance. Even if you know for certain that your members need a certain kind of conference or educational experience, the starting point should be what they want.

This is initial part of planning is where you can ask open-ended questions, such as "what time of year works best for your family?"

Tips for Date Selection

#Spring and fall meetings have good attendance. Families may travel during the summer, so offering the meeting as a vacation may have appeal. Winter storms can hinder travel.
#Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
#Consider holidays as you plan events—not just major holidays but feast days and other observances, depending on your members' affiliations. Holidays (such as Memorial Day, Independence Day, and Labor Day) can mean lower rates for hotels in business cities.
#Know when specialists that focus on your organization's condition go to their professional meetings. You may lose potential speakers if your conference coincides with meetings they must attend.

==Your Members' Interests==

Ask them what they want. This is their conference, and it cannot succeed unless it meets real needs. Some questions to consider: do they want a one-day conference or something longer? Do they want to meet on a weekend or weekday? Are there particular holidays that could coincide with this conference? Are there holiday periods you should avoid? What can they afford?

Answers to these questions will help you get a sense of how many people will actually come to a conference, a crucial starting point for planning location and activities.

==Your Goals for Serving Your Membership==

This is where you reconcile your sense of what your members need with what they want, and where you use what they want to create a curriculum for getting it to them. They may say their top need is to learn how to work for a cure for their children. This could translate into a conference in which they get talks about the current state of research from scientists along with workshops about informed consent and donating tissue.

==Costs and Scholarships==

Travel distances, lodging options, speaker costs, and supplies for the meeting will all figure into your final budget. It takes time to establish the details of this budget, but you'll need to start with a ballpark figure. As you consider what your families want and what your organization needs to share with them, you need to go beyond what families can afford and have a good sense of what your organization's costs will be. Consider name badges, signs for the conference site, packets for the members, registration forms, mailing costs, equipment rental, honoraria or gifts for your speakers, day care, etc.

Many organizations provide financial assistance to some of their members. To learn about some of the scholarship programs offered by other organizations, visit [[Scholarships for your participants/families/members]] and [[Setting Up A National Conference]].

Here is what one health advocate had to say about an organization's experience with conference funding and costs:

"We have had all our expenses covered for the past two conferences through sponsorships and low registration fees ($110 for the first family member, $90 for others; no fee for affected individuals or those under eight-years-old). We have a separate scholarship fund for needy families to attend and ask our donors to make a separate donation if they wish to help a family attend. We usually have enough to pay the registration fees and hotel fees for 2-3 nights for 7-10 families. We do not pay transportation. We go by the honor system. If they say they have a need and fill out the simple application form, then we try to help them. We give preference to first time attending families so if someone asks for a scholarship repeatedly I can simply say others that haven’t yet had a chance to attend have been chosen."

===Honorariums===
As for payment to speakers, groups are all over the place on this. Some pay none - though it is certainly just to compensate people for their time, it is hard to find funding for it. In some cases, groups fundraise for an event just for that expense.

For instance, PXE International, a very small organization (budget of ~$250K), gives an honorarium only when the speaker is critical to a meeting (a low vision specialist or plastic surgeon at a patient info meeting) and they can't find anyone else. They have paid anywhere between $100 to $500 for a workshop of a couple of hours.

Of course, top notch speakers charge a great deal - speaking fees for major speakers are in the tens of thousands and occasionally hundreds of thousands.

==Tips for Budgeting==

#Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
#You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
#Plan on gratuities of about 25% for meals.
#You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
#Don't forget conferences badges, printing and mailing costs, equipment rentals, gifts for speakers, and day care costs.

==Available Resources==

Consider in-kind and financial donations your organization can obtain. Is there a church that can offer space for your meeting? Are there manufacturers whose products your membership uses routinely? As with costs, you'll revisit resources as you do logistical planning, but a general sense of whom you can tap will help you scope your meeting effectively.

==Tips for Getting Funding==

#Exhibitor fees average $1,000.00 per booth.
#Give potential exhibitors about 6 months of lead time.
#If a company can't exhibit, ask for a donation. If you receive corporate sponsorships, make sure to provide them with a tax donation receipt.
#Do your members use specific products regularly, whether over-the-counter supplies or prescription medications? Ask the makers to exhibit or to provide a donation.
#If searching for a photographer or videographer to document your event, you may find success by reaching out to local colleges or universities. Students may provide this service for little or no cost.

==Logistical Planning==

Logistical planning revisits the same issues as setting scope and objectives, and you will also get feedback from your members in this phase, but the questions you ask will come with a range of options, as opposed to be open-ended.

There are several major aspects to planning a conference:

*Site selection
*Date selection
*Budgeting
*Funding
*[[Speaker selection and management]]
*[[Childcare]]
*Managing the timeline
*Photography or videography at the event
*Post-event communication

===Room-sharing and things to think about===

*If guests pay their own way to an event, and the organization has a contract with the hotel, the contract should stipulate that guests are responsible for EVERYTHING related to their stays...fees, damage, etc....and that guests make their own room arrangements. That separation should keep the organization safe from liability for individuals’ behaviors.
*If the organization is covering basic hotel costs (say for presenters), the contract should stipulate that, while the organization is paying for the room at the negotiated rate, guests are responsible for incidentals and any other fees or damage.
*If the organization insists on room sharing, things get murky, because proving culpability between two competing stories becomes a challenge. The organization has imposed the roommate requirement, and thereby puts all guests at risk of having a bad roommate. The person whose credit card secures the “incidental” charges may not be the perpetrator of damage or consumer of minibar treats, but that person is stuck with the bill. (Worse, if the organization uses it’s card to secure all rooms, all guests are completely off the hook. Fortunately, most hotels won’t allow guests to register without swiping a personal credit card.) Meanwhile, if the perpetrator does not cover the costs s/he incurs, the “damaged’ guest will inevitably come to the organization for a resolution. To keep the peace, the organization – the entity demanding room sharing – should probably be prepared to step up and absorb the costs and then (perhaps) pursue the perpetrator for reimbursement...or just suck it up as a cost of doing business.
*In all cases, the organization should disclaim to its guests the terms and conditions of the hotel arrangements that apply to the situation and declare clearly that the organization bears no responsibility for incidentals and damage. These stipulations should be stated as a condition of attendance at the event...very likely in a simple, boilerplate disclaimer in fine print somewhere in the “registration” or “invitation” acceptance materials. In registration materials, the financial transaction adds substance to the disclaimer. In “invitation acceptance” materials, it’s wise to get the guest to somehow acknowledge the disclaimer with a checkbox or initials along with a reminder that the hotel will require a personal credit card at registration to secure the room.

==Creative Welcome Sessions and Introductions==

*We have a New Family Orientation prior to the welcome reception. We connect new families with buddy families prior to this orientation and then they meet there. We go over ins and outs of the conference then. After that all families come to a very easy going and loud welcome reception. We don't do larger introductions there. Families can meet speakers throughout the weekend. They can talk to researchers at meals and poster sessions. Badges are color coded by form of batten and bereaved family badges have angel stickers.

*One we've used is cardboard questions...on one side answer Who I was... On the other Who I am now...

*As you know, ours is not a pediatric disease, so I probably am the last person to provide advice----but this year for the first time we had a woman affected with the language form of our dementia record a 3 min video welcome. She was also present and came up to the dais, but given her impairment a recording was definitely the way to go. It was incredibly moving and powerful, and conveyed a level of respect to the individuals affected that we had not before---given that this is a dementia, we historically have focused on the caregivers/families and spoken “about” the individuals affected. I’m just thinking that there may be some parallels here. For you, I wonder if you can select one boy who can talk about something great he’s accomplished this past year? Would be uplifting and a hopeful model for all?

*We have begun to use very pointed questions that one turns to one’s neighbor and shares about – for 2 minutes each. And then popcorn report out…

*Does anyone watch the Tony awards? They pan onto an actor (male or female) and the person says either " I am an actor because" or I am a producer because or they give their 2 sentence spiel. Or they give their spiel and then say. I'm Xxx and I'm an actor.

*We sometimes do table introductions and sharing instead of full room introductions and sharing. Another idea is to have people stand up if they have children 0-5, 6-13, 14-high school, out of HS, and/or some other characteristics.

*We have a mentor program. Returning families connect with new families prior to conference and at conference. We also set up tables by region so families can meet people in their area. We also have a group meeting for Moms only and Dads only.

*Sometimes to shake things up we do a stand up sit down game with fund and serious topics. But my only warning is whoever manages this needs to have a good command of the room. If not you can lose the room.

*Years ago I heard about one group who gave each family a poster and they were asked to bring photos of their family. They arranged the photos, listed where they were from and added any creative comments (hobbies, pets, jobs, etc.. The photos were on display at the Welcome reception and this helped with families getting to know one another early on. This takes some planning and materials and you probably won't get people to bring photos at this late a date. Smart phones have also taken away our spending time to print photos off.

*Our program director is very witty and funny. We have her moderate the ice breaker session and she makes it really fun with a lot of laughs. It seems to relax our members because they are still quite tense right at the beginning, especially the newcomers. Here’s a quick list of things she’s done:
**Standup/sitdown questions (how many conferences?, etc.)
**Purchased beach balls from the dollar store and wrote questions on each colored wedge in marker. Then broke into smaller groups and tossed the ball to each other and whatever question your right thumb lands nearest, you answer.
**Separate into 12 groups by birth month but let the group figure it out on their own.
**Had a huge circle in alphabetical order by last name
**This year she did “the wave” and it was so, so much fun.

*For our first morning session we create tables of 8 people who I put together carefully with newcomers and old timers and a moderator who does a short welcome and then gives a question to be answered by all at the table and they talk about that for about 15 minutes and then move on to the next question – have about 4 questions in all and it is a nice way for everyone to get to know each other better and make some friends.

*We also play “NBIA Bingo” at the end of this session. We create Bingo cards with questions in each block, like “Who is someone who has a baclofen pump?” and they have to walk around and ask people if they fit the question and if so, that person writes their name in the block. First person to get a full card filled out, wins. We give prizes to top 3 and then say that anyone who fills out their card during the day can turn it in for a NBIA pin so that gets them continuing to ask people questions and talking even after the game is over. Takes about 20 minutes or so depending on your crowd to get a winner, so allow enough time or maybe you could make it one line rather than a full card needed to win.

:I create 8 different versions of the game so each person at each table has different questions so everyone isn’t getting the same people and questions. I include a question for every family so you have to know your group pretty well or if desperate I put “Who is someone from Austin, Texas?” Families can go to their participant list and find the name and then search for that family. Also put questions about the organization like when were we founded, etc. and they can ask others or go to our website where they can find the answers there.

*We do what you have always done, but only have 30 families. I say "tell us where you are from and how many conferences you have attended." Recently, I heard a Podcast where the man introduced each speaker by the answer they had earlier give him to this q: what was the last illegal thing you did? Thought that would be a good change (or some other question).

*For our patient meetings, we use "Share your most embarrassing moment" as the icebreaker at the first dinner. Most people actually share something embarrassing, but for those few who don't feel comfortable, we ask them to share something that people wouldn't know about them. This has been so much fun, and the people who have the best stories are usually the ones you don't expect!

*One thing we did a few years ago that worked well was a spoof on speed dating. Chairs were set up opposite one another. On one side people stayed in their seats and on the other side they moved over a chair every three minutes. We gave them a list of questions they could ask one another if they were shy. It worked so well that it sort of fell apart at the end because everyone was talking to each other. Since that was the point I didn't see it as a bad thing. After a few ice breakers we have also started doing a team building exercise. That has been a hit. Last year our conference theme centered around a cruise ship theme. Attendees were divided into teams and given a bag of odds and ends such as scrap fabric pieces, safety pins, ribbon, feathers etc. They were then told to choose a model in the group and create an outfit to wear on a cruise. The creations were a riot! This year we had a wizard of Oz theme. Teams were given materials to make scarecrows. The challenge was half the team was blindfolded. The team members wearing the blindfolds built the scarecrows. The team members without were not allowed to touch the materials but instead had to give instructions to help the people wearing blindfolds. These have been great to illustrate it takes a team to find a cure. It also gets attendees talking to each other quickly about something fun and not too scary. A bonus was using the scarecrows as decorations at our dinner.

*This year we started a private Facebook group for conference attendees and got the excitement started before the retreat. The last couple of years we made the first night a superhero theme so kids would make crafts while parents mingle (during embassy suites happy hour reception) and the superhero costumes and princesses came to surprise the kids and take pictures. We have assigned seating at dinner (so new families are sitting with seasoned families) and have a slide show with the pics of the kids/families from each table as the microphone is passed for family introductions. . The slide show has cute little superhero graphics added to it.

==Use of Breakout Sessions==

It seems to me that giving a specific task is always good, but only if that task reflects the collective needs of the group. I would recommend that you use one of the following approaches:

:Survey attendees ahead of time to find out what they think are some of the barriers and then schedule focused working groups around those topics. Send out a background document ahead of time detailing the responses to the survey and giving people some information so that they’ll come to the meeting prepared OR plan talks for that morning so that they give people background on those issues.

:Organize the morning presentations as panels with a lot of discussion. Make one of the goals of the morning to identify major barriers. Then have a planning group (a few people from the morning presentations) meet to come up with specific breakout questions. Have those same individuals serve as facilitators for those groups (so that they clearly understand the context of why they were chosen).

:Make the breakouts longer and use the first 30 minutes or so to establish shared challenges. Then have the group pick one shared challenge to focus on. It is important for this type of breakout that you have someone facilitating and someone paying close attention to time, since you have to make a transition from general to specific.

Also, consider using activities to help determine priorities for your community. For instance, I organized one session at the conference (that received very positive feedback) for which I used the following format:

*One, overarching 10 minute presentation to give context
*Short 5 minute presentations (these could be examples of actual research projects that have failed or overall presentations of barriers)
*Break the group into small teams (those sitting around them, 4-5 people max) to come up with solutions in 30 minutes
*One person from each group presents those solutions
*Each individual votes on priorities (this was specific to funding for our session, but could also be used for organizational priorities or something similar).

==Tips for Managing the Timeline==

#Start planning your conference 12 to 14 months before the date.
#Book the site 12 to 14 months in advance.
#Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
#From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
#Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
#Mail registration forms about six to eight weeks before the registration deadline, but prepare to receive the majority of registrations just after the deadline date.
#As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
#Finalize the conference agenda as the registrations are coming in.
#As your registrations are coming in, prepare packets for your attendees.

Careful preparation means more time—and energy—to put out the inevitable last-minute fires!

==Site Selection==

Are your members clustered in one area? How close is your organization's location to the majority of members? What people resources do you have for the nitty-gritty of planning and working with the conference site?

What are your space requirements? You've already decided whether you need a church basement or a hotel; do you need multiple rooms for concurrent sessions? For exhibitors? For socializing?

==Tips for Site Selection==

#The number of people interested is the biggest factor in establishing the scope and location of your meeting.
#Hotel rates should be around $100.00 a night.
#Does the site you are considering have an indoor pool? An area where families can socialize?

For conferences in which your organization is expecting a smaller crowd, there are places the conference could be held that may be less costly than a hotel. One such venue could be faith-based or non-profit related organizations that have conference centers that are available for other organizations to use for a short period of time. [http://www.younglife.org/Camping/Pages/RetreatsAndConferenceUse.aspx Young Life] is an option for this. Furthermore, your organization may want to consider state parks, or university-owned meeting space or property, for example [https://www.bradwoods.org/facilities/meeting-spaces/ Bradford Woods].

==After the Conference==

*Send thank-you notes to all the volunteers, speakers, contributors, vendors, and other people who participated in the conference. Additional ways to show appreciation to conference speakers includes: giving the speakers a bag or t-shirt with the organization's logo, a plaque, or some other small gift such as gourmet popcorn.
*Send thank-you notes and evaluation forms to the attendees.
*Did you realize in hindsight that you should have done something differently? Write it down!

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

Connecting Individuals

2016-08-30T23:44:41Z

Akrokosky:

==International Contacts/Support Groups==

The world is no longer divided with big barriers between countries. The Internet provides for all of us access to the whole world—for advocacy organizations this is both exciting and frustrating. It is exciting because we cross borders and hold hands with others experiencing the same things we are experiencing. It is frustrating because we want to make the access easy and effortless. But different laws, languages, currencies and economies create difficulties in providing equal access.

One group is exploring the option of hosting support groups in hospitals, much like they do here in the United States. Advocates on MemberForum shared that occasionally they reimburse their international volunteers for expenses incurred in hosting (i.e. refreshments, postage, etc.). They ask for invoices or receipts like here in the USA, and the volunteers send them and then are paid usually through PayPal or wire. International hospitals all over the world have been very collaborative in this effort and are often enthusiastic! Even though it can be logistically difficult (distance, postage, language etc) we are totally convinced that offering services to patients with our syndrome in any other country is well worth the effort.

In places where we have a relatively large group of patients and families (for our syndrome, relatively large means about ten people!), we try to hold small support meetings. This is quite expensive, so we cannot do it very often, but we have held small regional meetings. We try to encourage establishment of “affiliates”, that can operate more easily and efficiently in their own countries. These organizations are associated in a collaborative way with us, sharing information and materials, but are independent entities with their own Boards.

==Pen and Email Pals==

Often individuals affected by genetic conditions, particularly rare ones, are few and far between. This can make it particularly difficult for them to find general sources for support and friendly interaction that involve a real understanding of their condition—it's the basis for the need for support and advocacy organizations in general. "Just to know one other person with this disease would make all the difference in the world!"

Pen pals have always been a great way for people in various parts of the globe to communicate, and in this electronic age, email pals can sometimes be a great way to connect individuals as well. The keys to making pen and email pal programs work are twofold: making it easy for pals to find each other, and making it easy for them to communicate.

You can ask individuals who are registering for your organization to indicate if they would like to be contacted as part of a "pals" program. You can then connect the people who chose to participate—sometimes via email (if they have given an email address), and also through the postal mail, if they give permission on their entry form.

You can also advertise a new pen and email pal program in your newsletter or on your website. If you distribute a paper newsletter, you may wish to include postal or email addresses from individuals who have given permission for this use in advance. However, it is wise not to publish this information in Web-based newsletters, although a password-protected members-only section of your site might be a good place.

Pals who correspond via email will generally find it easy to stay in touch—sometimes too easy! —but people who choose to correspond through postal mail may benefit from some extra help. One tip to suggest to your pen pal participants is including a self-addressed, stamped envelope with their mail to each other. It still divides up responsibility for postage, but can make it a little easier to get that reply out. Pals in the United States can purchase "International Reply Coupons" at the US Postal Service to include with envelopes to overseas pals.

More information about International Reply Coupons can be found at the USPS website.

==Phone Support Groups==

Because those needing support for a particular condition can be so geographically distant, remote support groups may become a helpful and viable tool. They have been utilized successfully by multiple groups in the US for both general discussion, and for specific predesignated topics affecting their membership. Having a few running groups for different topics or sets of individuals (i.e. parent of child, adults, etc.) is popular. [https://www.spiderphone.com/ Spiderphone] is a recommended communication service for this purpose, because the sessions can be recorded and are then posted for the members on a password protected site.

==Interactive ways to show where people are==

As it becomes easier and easier for people to connect from wherever they are, sometimes a visual of where individuals are located can be helpful (and fun)! Check out www.aefsupport.org/map for one option (free, although this group opted for the $38 ad-free version). Google also allows you to create one: https://www.pxe.org/about-pxe-international/where-world-pxeers is an example.

==Privacy Note==

Refraining from putting member contact information on your website is partly a privacy issue and partly a simple logistics issue. You typically want your website to have the broadest possible accessibility, and while you want users of the site to be able to contact you, some visitors may come for other reasons—collecting email addresses for commercial purposes, for example—and you should protect your members from this kind of access.

Some of your members may wish to maintain a degree of privacy in postal mail interactions as well. In this case, you can set up a "forwarding" system, in which pals send their letters to your office with some identifier of the recipient—name and a "PO Box" number (in the event that you have more than one member with the same name, or as a way to allow individuals to use first names only). This type of protection requires some additional work and cost, but it may provide that extra layer of reassurance for some members.

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

Building a Website

2016-08-29T01:58:11Z

Akrokosky: /* Web Site Designers */

Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot of cases, they can be a first or early source of information on genetic disorders. A well-designed website that gets a lot of traffic can be an enormous asset. There are no hard and fast standards as far as content. However, Genetic Alliance's Access to Credible Genetics Resources program has toolkits addressing this, and many universities also have suggestions and scales to rate resources.

==Tips Before You Start==

There are dozens of books and websites that discuss the best way to design a site for specific purposes, and some of the most important guidelines are these:

*Use images carefully, and pay attention to their size—they should load easily even using dial-up connections.
*By all means, use color as a design element, but for sections of the page where there are chunks of text, the most legible combination is black text on a white background.
*Consider accessibility issues—can a user with low vision using a voice browser understand the way information is presented on the page? How about a color-blind user?
*Avoid animations and movies. Animations distract users. Flash is a popular software for creating animated websites or serving miniature movies, but it has virtually no accessibility features for sensory-impaired individuals. Using these techniques on your organization's site will limit your audience and may detract from your website's purpose: to share information and link members.
*Keep it simple. The simpler your site is, the easier it is for your users—and for the people who update it.

==Making a Website==

===Web Site Hosting===

If your organization is interested in building your own web site, you'll need to choose an appropriate 'host.' In deciding what host to use, it's important to consider what components you want your site to have such as text and graphics only or extras such as a store or message boards? Other things to think about include: Does the host offer the following - mysql - for a database? PHP - for making dynamic websites? or Email accounts? How much bandwidth will you be allowed each month? How much storage will you have on the website host? How good is technical support? Is it by phone or email? How much will it cost per month?

Here are some companies that other organizations use:
*[http://www.GoDaddy.com GoDaddy] - "GoDaddy are OK but as a web host they are not one of the best or the most reliable.
One common problem is they make it very difficult for the customer to transfer domain names - The web address of your website to another web site host. Another big problem is spam.. and we all hate spam. Some customers have complained that there website name (domain name) is easy to use by hackers and spammers because they charge extra for privacy and security tools. Now don't get me wrong I am not saying don't go there, because they have a lot of happy customers, Just be careful."
*[http://www.webtrix.com Webtrix] - "Very reliable and helpful. Easy to get in contact with when you have questions."
*[http://www.datarealm.com/ Datarealm Internet Services] - "We have used Datarealm Internet Services for years and been very happy with them. I think their non-profit rate is about $49.75 for six months."
*[http://www.aspwebhosting.com ASP Webhosting]
*[http://www.rackspace.com Rackspace] - "I've found them responsive and their web interface is very easy to use. In addition, they have a lot of room for expansion and offer many backup options to keep your website up and running."

===Web Site Designers===

Many organizations are finding designers to build intricate sites for them, in order to provide sophisticated services like message boards and databases of resources for disorders. Hiring a web designer to do freelance work is a reasonable option for advocacy organizations, especially if there is not enough work or monetary resources to support a full time employee. In order to circumvent this problem, it might be possible for multiple orgs to hire a professional and give them work on a contractual basis so they would have a full workload. It would be also a great introduction for them into the non-profit sector. Another option is to ask volunteers to build and maintain the website. This could work for specific sites and orgs, but volunteers usually work on a very flexible schedules, and may not be able to respond to immediate website needs. Consistency is the important thing. It is extremely beneficial if the website is constructed with solid code and updates are made regularly.

Many web designers have websites, like this:
*http://www.yourgraphicsguy.com
*http://www.webtrix.com (Good for hosting and designing complex features like shopping carts, and you can do maintenance yourself.)
*http://www.kineticsolutionsservices.com/
*http://www.novelprojects.com/
*http://www.studio162.com

Here's a list of companies that other disease-specific organizations have used and approved of their work:

*[http://www.aimg.com Accurate Imaging]
*[http://www.cermack.com Cermack]
*[http://www.firespring.org/ Firespring] - One group said "The top selling points for us included their beautiful responsive design templates, their focus on nonprofits and integrated tools like email marketing, donor management and fundraising campaigns. I have only good things to say about this company. Their customer support is fantastic." And another added "We also started using Firespring just last year and we have gone from the expense of needing to use a professional Webmaster to add news and make adjustments to our site to now where a few of us are able to keep up with our site, add calendar events, News, and the latest research on HSP and PLS for our community. The system is really easy to work with and our costs have gone down dramatically."
*We hired a wonderful company called iFactory, based in Boston. Kimberly Emrick was our contact and she was outstanding. They developed a very good understanding of accessibility issues as well, since our agency worked with people who are deafblind.
*A wonderful digital partner, OneUpWeb (we’ll continue a long-term partnership with them). They truly sought to understand the needs of our genetic disease and patient community and we couldn’t be happier.
*I got and get help from Steve Shoffner at www.fefifolios.com. He mostly designs websites for artists. He guided me to learn enough so I can make changes and even take on some designing. At first he was concerned that he didn't know anything about what our organization does, but once I encouraged him that it's all the same in terms of information-sharing and user experience, we worked well together. For content, I had to do the heavy lifting and look at other examples, and think about how to organize the info. It's more work, but it costs less overall, and I'm empowered to keep it up-to-date. It was much less work than I thought it would be!

==Using a Content Management System==

Content Management Systems can be both a great help and a great hinderance in designing a web site. With some content management systems, groups find them to be inflexible and feel "trapped" in not being able to meet their needs, while other content managemen systems work well. Here are some tips from groups that use them:

*Joomla is a super system for developing a CMS website. Best of all it is free to use. It has a huge community of users, with a massive range and style of websites. The joy of setting up a website using it is that the site can be as simple or complex as you need, and the site can grow with you, by adding plug-ins and other tools to meet your needs. Lots of templates to get you going so if you find one you like, you can be up and running in under an hour. For a small website it can be a bit big, but on the whole it is great.

*A small site can be developed using WordPress, although normally used for blogging, Wordpress is a very powerful CMS tool. You can have a play with wordpress at no cost by going to [http://wordpress.com here]. You can sign up and create a site on the wordpress servers, and if it works for your needs, you can go to [http://wordpress.org here] to download a copy to install on your own server. It is also free.

*A few basic requirements you will need to check with your web hosting service no matter what CMS system you choose to use:
**Ask if you have PHP - version 5 is best but you can get away with a lowerversion numnber (not recomended though).
**Also you need a MYSQL Database on your hosting package.
**Your Hosting also needs to be on a LINUX server (Not a windows server.)
**If your hostimng meets the above requirements you are fine, otherwise for any free CMS you may need to switch or upgrade your web hosting package.

==Evaluating Your Site==
It is a good idea to evaluate your website every once in a while to see if it is functioning at its highest potential. There are some services out there that can help you with your evaluation.

WebXACT (formerly BOBBY) is a web-based service that checks sites for accessibility. It evaluates your site and lists recommendations to improve accessibility. You can ask it to use the World Wide Web Consortium Guidelines (available at W3.org) or [http://www.access-board.gov/sec508/e-learning.htm/Section 508 Guidelines].

W3 and Section 508 rules are for format. Consider guidelines for content, as well. We recommend [http://www.hon.ch/HONcode/Guidelines/guidelines.html] on the Net Foundation—Code of Conduct. This code has guidelines for authority, accountability, and attribution that form a solid basis not only for designing your site's approach to information but for evaluating other sites as well.

== Evaluating Resources ==
One of the main services advocacy organizations can offer through their print and electronic tools is providing quality and accurate information about a condition as well as helping people sort through health information found from various other sources.

Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the [http://www.trustortrash.org/developer ''Trust It or Trash It?''] tool.

Your members may have many places they find information other than your organization. Encourage them to use the [http://www.trustortrash.org ''Trust It or Trash It?''] tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more visit [http://www.youtube.com/geneticalliance#p/u/6/IKa7BlKpPZg Genetic Alliance's YouTube Channel].

==Factors to Consider==
*The complexity of the site design
*Resources available to the organization for site design
*The cost of professional site help
*The potential of the site for growth and change (especially complicated additions like message boards and shopping carts)
*Location! Prices for web design services tend to vary; they are generally higher near large cities.
*Some designers pay per page, and often prices vary based on the amount of coding that needs to be done.
*It is always worth writing to the CEO of the hosting company you like the look of. Often you may either get a good deal or an offer of free hosting.
*On the subject of domain names... A lot of nasty people may see your domain getting traffic and set up a copy cat advertising domain trading on the miss typing of the charity domain. They set up a single page advert site. It is worth investing in the main names for your site to avoid this situation and to protect your intellectual property.

 It's worth shopping around based on your organization's needs!

While on the topic of intellectual property rights, it is important to note that it is also possible for people to steal images that you post to your site. Thus, it is important to consider the possible measures that can be to taken to reduce or eliminate the likelihood this unfortunate circumstance could occur. Below are some thoughts on this, along with some mechanisms organizations utilized to keep their photos protected.

Jean Pickford

Foundation for Ichthyosis & Related Skin Types, Inc.

“ The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) represents patients with a very visible and disfiguring genetic skin disease. We have consented photos on our website that show the various forms of the disease, ranging from newborns to adults. There have been occasions when our photos have been copied from our website and posted on social media sites to gain attention/followers. In one case last year, a photo of a harlequin ichthyosis newborn was taken from our site and posted on Facebook, which went viral (i.e., one like = one prayer for this baby) with more than 2 million likes & more than 30,000 comments. Needless to say, some of the comments were nasty, like “this is a reptile baby” or “it’s an alien, put them out of their misery.”

Some of us here at FIRST feel very strongly that it is our duty to protect these photos from any exploitation on behalf of those we serve, and thus, they should be “watermarked.” However, others feel very strongly that a watermark detracts from the purpose of the photo in helping physicians, families, and others who are trying to learn about the disease.

In discussing it with some of our board members and web admins, we have added a “blocker” that pops up when you right click any photos on our site as well as a watermark on the images, so if they are taken without permission, they can’t be used. An example of this can be viewed at: [http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Harlequin-Ichthyosis/page_id/547 FIRST Harlequin Ichthyosis].”

Janet Long

US Hereditary Angioedema Center

“The website where we host our images is: [https://www.haeimages.com HaeImages]. With so many players in our “HAE space”, we found our web site images appearing in good places and bad. Therefore, we organized an image repository where patients could donate images and we could somewhat handle their use via the sale of them; the sales could in return support new research.

It has been as successful as I could have hoped, I think, in keeping our images safe.
However, there are still images taken from our web site (we did not watermark them, but instead trademarked the web site and this is usually enough to scare folks off from stealing….)”

“For the specific issue of a forum, some web development companies could be a good fit for advising on this. I'd strongly recommend finding a stable off the shelf solution rather than trying to roll your own unless you have mountains of money to throw at it. If you identify the product that you want to use, then sometimes the company that develops the product can recommend experienced implementation people.”

Christy Collins

M-CM Network

==Search Engine Optimization and Helping People Find Your Site==

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites.

===Generate A Keyword List===

The first thing to do is generate a list of keywords, or search terms, to target. This list may include all of the disease/syndrome names that your organization covers (including acronyms, abbreviations and variants), significant symptoms or signs, and anything else that a person might punch into a search engine when they are looking for the information that your site offers. You may want to survey some new members to see if they looked for you via search engine and if they remember what words they searched for. Once you have this list, sort it by relevance.

===HTML tags for SEO===

Important html tags for search engine optimization are fairly simple.
* The most important tag is <title>. The <title> tag doesn't actually appear on your web page, but rather in the top of your browser window. It will be used as the title of your search result listing on Google and the default title if your page is shared on Facebook.
* Next are heading tags: <pre><h1>, <h2>, <h3></pre> With h1 being the most important. Survey your site's content for places that you can sensibly fit your keywords into these tags.
* Set a meta description tag for the most important pages on your site and consider using your keywords here. Like the <title> tag, the description tag doesn't display on the site, but it has a lot of utility for other sites that parse your content. Besides search rank, Google uses it to display in it's search results. It is used on Facebook when your page is shared on a user's wall. This tag looks like: <pre><meta name="description" content="My page description." /></pre> Google will display the first 150 characters in the content attribute, you should try to keep the size of your description in that range.

===Incoming Links===

There is much nastiness on the internet due to the fact that incoming links boost search rank. Fortunately for many of us, our search terms are so obscure that we don't have a lot of competition for rank, and a little bit of effort with integrity should go a long way. The most important detail to know is that linking a keyword to your site will be much more powerful than linking a generic phrase like "click here" or "link".
Some simple suggestions:
- If you get media publicity, make sure that any internet version of the article correctly links to your site. If it doesn't, politely request that the link be added. A newspaper is not obligated to to do this, but it's worth asking.
- If you have affected families, fundraisers or board members who have their own blogs or websites, suggest ways that they could link to you if they are not already doing so. You may even want to offer badges that link to your site.

===Other Traffic===

* Facebook has potential for generating valuable traffic to your site, although most Facebook linking will not affect your Google search rank. Add Facebook "like" and "share" buttons to your site. Take a look at the default content that Facebook displays when a page on your site is shared to verify that it's accurate and helpful. This will consist of your <title> tag and meta description OR largest block of paragraph content if you don't have a meta description.
* Wikipedia links also do not contribute to search engine rank. However, when searching on medical terms and syndrome names, Wikipedia results often come up in the top three results. Make sure your organization is linked to from the links section of the wikipedia page/s for your disease. If your disease doesn't have a wikipedia page, make one.
* Be sure your disorder is listed on the appropriate databases, that the information is current and accurate and that your advocacy site is linked to. [[Information about Rare Genetic Diseases|Disease Databases]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Developing a Governance Board

2016-08-29T01:55:13Z

Akrokosky: /* Policies for Changing Board Membership - Recruiting or Replacing Board Members */

==How Will You Motivate Them?==

There are many reasons why individuals might choose to make a difference by supporting your organization and helping to guide it. Some of these might be:

*To contribute to a good cause
*To be involved in a dynamic grassroots organization
*To associate with other exciting and inspiring individuals
*To assist a related cause, for example, your condition might cause heart disease and someone might wish to impact heart disease in a very focused way
*A personal connection: an individual is a friend or relative of a person affected by the condition

Once you understand what motivates people to serve, you can recruit individuals you think will create the right culture for your board.

==Key Board Principles==

Genetic Alliance recognizes the importance of board development for its member groups. To help these organizations reach optimal board functioning, Genetic Alliance has developed its Organization Incubator program, based on Jim Collins' book, ''Good to Great''. This program helps participating boards adopt key organizational and operational principles, including

*Level 5 Leadership - Recognizing, supporting, and recruiting for leadership of the highest caliber.
*First Who¦Then What - Getting the right leaders involved before deciding what to do.
*Confront the Brutal Facts with Unwavering Faith - Adopting a climate of truth-telling and open communication.
*Defining - Specializing in a limited number of areas.
*Culture of Discipline Combined with an Ethic of Entrepreneurship - Combining responsibility with freedom.
*The Flywheel and the Doom Loop - Building momentum up to and beyond a breakthrough point.
*Self-identification - Understanding how what is said may be true about one's self.
*Deeper understanding - Getting to the deeper essence of an issue.
*Authentic interactions - Being real and true even when it is uncomfortable.
*Self-evaluation - Assessing whether one is achieving his or her potential.
*Everyone monitors quietness from members - Maintaining engagement from all board members.
*Everyone monitors over activity from members - Having group responsibility for balanced discussion.
*Members can't disappear - Ensuring that issues are addressed once presented.
*Dialogue and debate - Teaching board members to avoid case-building or coercion.
*A climate where truth is heard - Developing transparency on the board.
*Review/reflect on successes - Acknowledging accomplishments when they occur.
*The single most important item I put in every one of them is the requirement to review, revise and amend the charter every 6-12 months. Putting that in the charter allows you to evolve as you learn how to be more effective and avoid the usual challenge of "just leave it alone". As a requirement, it keeps the door wide open to learn and improve as you go.
*I urge you to have an EXPERIENCE EO (exempt organization) attorney review your bylaws, policies, and procedures for all possible vulnerabilities that open the door to an insurgency.

One example to put some substance to the suggestion.
There are two basic types of nonprofit corporation:
1. Membership
2. Non-Membership
Overly simplified, in membership corporations, members elect the board. In non-membership corporations, the board elects the board.
(Corporation members are not to be confused with “promotional members.” A promotional member is just a sales tool that entitles a “member” to certain benefits, but not voting rights—“membership has its benefits” as the credit card says.)Personally, I highly recommend a non-membership corporation. But both can be done well, and both can be vulnerable.

Membership corporations are required by law to conduct an official “annual meeting” at which members get to exercise their rights to elect directors and so on. (this may vary from state to state.) What’s the risk? Most annual meetings are sparsely attended. Directors and a smattering of the most loyal members attend, and annual meetings typically unfold without drama. But, if the election process isn’t very carefully prescribed and controlled...typically in advance of the meeting...all hell can break loose at an annual meeting making it resemble a Republican or Democratic National Convention. Many membership corporations are too loose with nomination and election procedures. One example: they allow nominations “from the floor” at the meeting. That’s the opening insurgents can easily exploit.

*Joining the board of directors for any organization should be an application process:
**This starts with a job description, list of skills needed, experience required, and responsibilities. Things such as fundraising policy (e.g. give or get) and so on should be clearly stated. It’s a commitment.
**Applicant’s expression of interest – e.g. cover letter – that covers, among other things, the applicant’s claims to be suited to the role. As with a job application, the applicant interprets his/her résumé in accord with the job description, and itemized claims regarding suitability to meet the requirements in the job description.
**Résumé.
**References...both professional, and if possible from prior boards.

==Nuts and Bolts of a Board==

===Reimbursing Board Member Travel and Meeting Expenses===
There is no overall consensus on how to approach this common question!

*One organizations pays the costs of the meeting room(s), but directors “go Dutch” on meals (or someone picks up the tab). So the organization might pay $300 to $500 for meeting space in an airport hotel, and the directors pick-up the rest, including travel to the meeting.

*Our board pays their own transportation and accommodations, and the organization pays for meals.

*Our board pays their own transportation and accommodation as well. We handle meals and venue if need be.

*We pay for the cost of transportation for our board members, meals and hotels. We do split the international costs by years. Our Board members are expected to fundraise and are a working board, with projects of their own. We pay the reasonable expenses of some projects. As well, all our board members are expected to contribute financially to the organization.

*Historically our board has met five times per year, four by phone and once in person. Board members have been responsible for covering all of their own costs for travel and hotel; the organizations pays for the meeting and meals during our meeting. The in-person meeting moves around the country, as it is held in conjunction with our annual education conference. Last month, due to growth of the organization, my board voted to start having a second in-person meeting per year--to be held in Philly, near our office. We are currently looking into an equitable way to achieve cost sharing for this static annual meeting, as the cost burden will be inequitable for board members who live near Philly vs those traveling from other parts of the country.

*Our group meets face-to-face twice per year (when possible). We make one of those meetings at our conference which takes place every two years. For the board meeting at the conference, they have already paid their own way to get there. For all other board meetings, the organization picks up the travel costs. We do have a few members who pay their own way to save the organization those fees which is much appreciated. We’ve also historically held meetings at a board member’s home; this saves significantly on food costs, plus they are able to host guests in their home. This option is likely to disappear soon, but it was good while it lasted!

*We use a monthly newsletter in between our in-person meetings. We also offer a Skype option.

*We have an alternative approach. Our board currently is not primarily tasked with fund raising - they are overseers and advisors. We cover all of their expenses to attend an annual face to face board meeting ... trying to piggyback on some other event or other travel where we can save $$$. Frankly, I prefer to look at it this way. We cover their expenses to make it easy for us to get the best advice and guidance that we can ... If they were not able to serve because they were unable to pay a few hundred dollars a year out of their pockets it would be our loss, not theirs. The in between meetings are via conference call/webinar, likely video conference call next time around.

*This is an ongoing topic for our organization. We have a fundraising board who is also expected to make a significant annual contribution. We meet via video conference ~10 times per year and in person once (in addition to monthly committee meetings, which take place via video conference). Historically we have offered a $500 reimbursement for board expenses, which include travel and lodging, while we pay for the conference and meal costs. Most of the time more than 50% of board members elected to pay for their own costs and not request any reimbursement. This past year we took on the lodging and asked board members to pay their own airfare. However, if a board member was unable to attend due to inability to afford airfare we offered reimbursement.

===Policies for Changing Board Membership - Recruiting or Replacing Board Members===

* One example of a removal policy - Any Director elected or appointed by the Board of Directors may be removed by the Board of Directors whenever in its judgment, the best interest of the corporation would be served thereby, but such removal shall be without prejudice to the contract rights, if any, of the person so removed. Directors may be removed before the end of their term by a majority vote of the Board of Directors during a Regular Meeting or Special Meeting. A Director will receive, at minimum, five (5) days notice that such a vote will be held as per Article V, Section 6. Reasons for removal may include, but are not limited to, violations of the Board Member Contract and/or Board policies including those addressing Confidentiality, Ethics, and Conflict of Interest. A successor need not be elected at the time of removal.

*There are great free resources for non profit organizations about how to ensure that Boards understand their non profit responsibilities. Two are below. It's good when you are working with difficult Board members, or trying to make your board more effective, to have some resources that you can share with them for self assessment, better understanding their board member obligations, etc. so it's not just you telling them they have to change or up their game!
**BoardSource, even though they do have paid members, also have free resources, which you can find at https://www.boardsource.org/eWeb/DynamicPage.aspx?webcode=BDSCommunityRsc
**National Council of Nonprofits board resources at https://www.councilofnonprofits.org/tools-resources-categories/boards-and-governance including a specific section on nonprofit board responsibilities at https://www.councilofnonprofits.org/tools-resources/board-roles-and-responsibilities

==Internal Links==
*[[Advisory Boards]]
*[[Bylaws and Articles]]
*[[Finding a Lawyer]]
*[[Your Organization's Name Is Important|Organization's Name]]
*[[Staff]]
*[[Tax and Finance]]
*[[Working Remotely]]
*[[Working with a Lawyer]]

Developing a Governance Board

2016-08-29T01:54:29Z

Akrokosky: /* Policies for Changing Board Membership - Recruiting or Replacing Board Members */

==How Will You Motivate Them?==

There are many reasons why individuals might choose to make a difference by supporting your organization and helping to guide it. Some of these might be:

*To contribute to a good cause
*To be involved in a dynamic grassroots organization
*To associate with other exciting and inspiring individuals
*To assist a related cause, for example, your condition might cause heart disease and someone might wish to impact heart disease in a very focused way
*A personal connection: an individual is a friend or relative of a person affected by the condition

Once you understand what motivates people to serve, you can recruit individuals you think will create the right culture for your board.

==Key Board Principles==

Genetic Alliance recognizes the importance of board development for its member groups. To help these organizations reach optimal board functioning, Genetic Alliance has developed its Organization Incubator program, based on Jim Collins' book, ''Good to Great''. This program helps participating boards adopt key organizational and operational principles, including

*Level 5 Leadership - Recognizing, supporting, and recruiting for leadership of the highest caliber.
*First Who¦Then What - Getting the right leaders involved before deciding what to do.
*Confront the Brutal Facts with Unwavering Faith - Adopting a climate of truth-telling and open communication.
*Defining - Specializing in a limited number of areas.
*Culture of Discipline Combined with an Ethic of Entrepreneurship - Combining responsibility with freedom.
*The Flywheel and the Doom Loop - Building momentum up to and beyond a breakthrough point.
*Self-identification - Understanding how what is said may be true about one's self.
*Deeper understanding - Getting to the deeper essence of an issue.
*Authentic interactions - Being real and true even when it is uncomfortable.
*Self-evaluation - Assessing whether one is achieving his or her potential.
*Everyone monitors quietness from members - Maintaining engagement from all board members.
*Everyone monitors over activity from members - Having group responsibility for balanced discussion.
*Members can't disappear - Ensuring that issues are addressed once presented.
*Dialogue and debate - Teaching board members to avoid case-building or coercion.
*A climate where truth is heard - Developing transparency on the board.
*Review/reflect on successes - Acknowledging accomplishments when they occur.
*The single most important item I put in every one of them is the requirement to review, revise and amend the charter every 6-12 months. Putting that in the charter allows you to evolve as you learn how to be more effective and avoid the usual challenge of "just leave it alone". As a requirement, it keeps the door wide open to learn and improve as you go.
*I urge you to have an EXPERIENCE EO (exempt organization) attorney review your bylaws, policies, and procedures for all possible vulnerabilities that open the door to an insurgency.

One example to put some substance to the suggestion.
There are two basic types of nonprofit corporation:
1. Membership
2. Non-Membership
Overly simplified, in membership corporations, members elect the board. In non-membership corporations, the board elects the board.
(Corporation members are not to be confused with “promotional members.” A promotional member is just a sales tool that entitles a “member” to certain benefits, but not voting rights—“membership has its benefits” as the credit card says.)Personally, I highly recommend a non-membership corporation. But both can be done well, and both can be vulnerable.

Membership corporations are required by law to conduct an official “annual meeting” at which members get to exercise their rights to elect directors and so on. (this may vary from state to state.) What’s the risk? Most annual meetings are sparsely attended. Directors and a smattering of the most loyal members attend, and annual meetings typically unfold without drama. But, if the election process isn’t very carefully prescribed and controlled...typically in advance of the meeting...all hell can break loose at an annual meeting making it resemble a Republican or Democratic National Convention. Many membership corporations are too loose with nomination and election procedures. One example: they allow nominations “from the floor” at the meeting. That’s the opening insurgents can easily exploit.

*Joining the board of directors for any organization should be an application process:
**This starts with a job description, list of skills needed, experience required, and responsibilities. Things such as fundraising policy (e.g. give or get) and so on should be clearly stated. It’s a commitment.
**Applicant’s expression of interest – e.g. cover letter – that covers, among other things, the applicant’s claims to be suited to the role. As with a job application, the applicant interprets his/her résumé in accord with the job description, and itemized claims regarding suitability to meet the requirements in the job description.
**Résumé.
**References...both professional, and if possible from prior boards.

==Nuts and Bolts of a Board==

===Reimbursing Board Member Travel and Meeting Expenses===
There is no overall consensus on how to approach this common question!

*One organizations pays the costs of the meeting room(s), but directors “go Dutch” on meals (or someone picks up the tab). So the organization might pay $300 to $500 for meeting space in an airport hotel, and the directors pick-up the rest, including travel to the meeting.

*Our board pays their own transportation and accommodations, and the organization pays for meals.

*Our board pays their own transportation and accommodation as well. We handle meals and venue if need be.

*We pay for the cost of transportation for our board members, meals and hotels. We do split the international costs by years. Our Board members are expected to fundraise and are a working board, with projects of their own. We pay the reasonable expenses of some projects. As well, all our board members are expected to contribute financially to the organization.

*Historically our board has met five times per year, four by phone and once in person. Board members have been responsible for covering all of their own costs for travel and hotel; the organizations pays for the meeting and meals during our meeting. The in-person meeting moves around the country, as it is held in conjunction with our annual education conference. Last month, due to growth of the organization, my board voted to start having a second in-person meeting per year--to be held in Philly, near our office. We are currently looking into an equitable way to achieve cost sharing for this static annual meeting, as the cost burden will be inequitable for board members who live near Philly vs those traveling from other parts of the country.

*Our group meets face-to-face twice per year (when possible). We make one of those meetings at our conference which takes place every two years. For the board meeting at the conference, they have already paid their own way to get there. For all other board meetings, the organization picks up the travel costs. We do have a few members who pay their own way to save the organization those fees which is much appreciated. We’ve also historically held meetings at a board member’s home; this saves significantly on food costs, plus they are able to host guests in their home. This option is likely to disappear soon, but it was good while it lasted!

*We use a monthly newsletter in between our in-person meetings. We also offer a Skype option.

*We have an alternative approach. Our board currently is not primarily tasked with fund raising - they are overseers and advisors. We cover all of their expenses to attend an annual face to face board meeting ... trying to piggyback on some other event or other travel where we can save $$$. Frankly, I prefer to look at it this way. We cover their expenses to make it easy for us to get the best advice and guidance that we can ... If they were not able to serve because they were unable to pay a few hundred dollars a year out of their pockets it would be our loss, not theirs. The in between meetings are via conference call/webinar, likely video conference call next time around.

*This is an ongoing topic for our organization. We have a fundraising board who is also expected to make a significant annual contribution. We meet via video conference ~10 times per year and in person once (in addition to monthly committee meetings, which take place via video conference). Historically we have offered a $500 reimbursement for board expenses, which include travel and lodging, while we pay for the conference and meal costs. Most of the time more than 50% of board members elected to pay for their own costs and not request any reimbursement. This past year we took on the lodging and asked board members to pay their own airfare. However, if a board member was unable to attend due to inability to afford airfare we offered reimbursement.

===Policies for Changing Board Membership - Recruiting or Replacing Board Members===

* One example of a removal policy - Any Director elected or appointed by the Board of Directors may be removed by the Board of Directors whenever in its judgment, the best interest of the corporation would be served thereby, but such removal shall be without prejudice to the contract rights, if any, of the person so removed. Directors may be removed before the end of their term by a majority vote of the Board of Directors during a Regular Meeting or Special Meeting. A Director will receive, at minimum, five (5) days notice that such a vote will be held as per Article V, Section 6. Reasons for removal may include, but are not limited to, violations of the Board Member Contract and/or Board policies including those addressing Confidentiality, Ethics, and Conflict of Interest. A successor need not be elected at the time of removal.

*There are great free resources for non profit organizations about how to ensure that Boards understand their non profit responsibilities. Two are below. It's good when you are working with difficult Board members, or trying to make your board more effective, to have some resources that you can share with them for self assessment, better understanding their board member obligations, etc. so it's not just you telling them they have to change or up their game!

**BoardSource, even though they do have paid members, also have free resources, which you can find at https://www.boardsource.org/eWeb/DynamicPage.aspx?webcode=BDSCommunityRsc

**National Council of Nonprofits board resources at https://www.councilofnonprofits.org/tools-resources-categories/boards-and-governance including a specific section on nonprofit board responsibilities at https://www.councilofnonprofits.org/tools-resources/board-roles-and-responsibilities

==Internal Links==
*[[Advisory Boards]]
*[[Bylaws and Articles]]
*[[Finding a Lawyer]]
*[[Your Organization's Name Is Important|Organization's Name]]
*[[Staff]]
*[[Tax and Finance]]
*[[Working Remotely]]
*[[Working with a Lawyer]]

Developing a Governance Board

2016-08-29T01:51:09Z

Akrokosky: /* Key Board Principles */

==How Will You Motivate Them?==

There are many reasons why individuals might choose to make a difference by supporting your organization and helping to guide it. Some of these might be:

*To contribute to a good cause
*To be involved in a dynamic grassroots organization
*To associate with other exciting and inspiring individuals
*To assist a related cause, for example, your condition might cause heart disease and someone might wish to impact heart disease in a very focused way
*A personal connection: an individual is a friend or relative of a person affected by the condition

Once you understand what motivates people to serve, you can recruit individuals you think will create the right culture for your board.

==Key Board Principles==

Genetic Alliance recognizes the importance of board development for its member groups. To help these organizations reach optimal board functioning, Genetic Alliance has developed its Organization Incubator program, based on Jim Collins' book, ''Good to Great''. This program helps participating boards adopt key organizational and operational principles, including

*Level 5 Leadership - Recognizing, supporting, and recruiting for leadership of the highest caliber.
*First Who¦Then What - Getting the right leaders involved before deciding what to do.
*Confront the Brutal Facts with Unwavering Faith - Adopting a climate of truth-telling and open communication.
*Defining - Specializing in a limited number of areas.
*Culture of Discipline Combined with an Ethic of Entrepreneurship - Combining responsibility with freedom.
*The Flywheel and the Doom Loop - Building momentum up to and beyond a breakthrough point.
*Self-identification - Understanding how what is said may be true about one's self.
*Deeper understanding - Getting to the deeper essence of an issue.
*Authentic interactions - Being real and true even when it is uncomfortable.
*Self-evaluation - Assessing whether one is achieving his or her potential.
*Everyone monitors quietness from members - Maintaining engagement from all board members.
*Everyone monitors over activity from members - Having group responsibility for balanced discussion.
*Members can't disappear - Ensuring that issues are addressed once presented.
*Dialogue and debate - Teaching board members to avoid case-building or coercion.
*A climate where truth is heard - Developing transparency on the board.
*Review/reflect on successes - Acknowledging accomplishments when they occur.
*The single most important item I put in every one of them is the requirement to review, revise and amend the charter every 6-12 months. Putting that in the charter allows you to evolve as you learn how to be more effective and avoid the usual challenge of "just leave it alone". As a requirement, it keeps the door wide open to learn and improve as you go.
*I urge you to have an EXPERIENCE EO (exempt organization) attorney review your bylaws, policies, and procedures for all possible vulnerabilities that open the door to an insurgency.

One example to put some substance to the suggestion.
There are two basic types of nonprofit corporation:
1. Membership
2. Non-Membership
Overly simplified, in membership corporations, members elect the board. In non-membership corporations, the board elects the board.
(Corporation members are not to be confused with “promotional members.” A promotional member is just a sales tool that entitles a “member” to certain benefits, but not voting rights—“membership has its benefits” as the credit card says.)Personally, I highly recommend a non-membership corporation. But both can be done well, and both can be vulnerable.

Membership corporations are required by law to conduct an official “annual meeting” at which members get to exercise their rights to elect directors and so on. (this may vary from state to state.) What’s the risk? Most annual meetings are sparsely attended. Directors and a smattering of the most loyal members attend, and annual meetings typically unfold without drama. But, if the election process isn’t very carefully prescribed and controlled...typically in advance of the meeting...all hell can break loose at an annual meeting making it resemble a Republican or Democratic National Convention. Many membership corporations are too loose with nomination and election procedures. One example: they allow nominations “from the floor” at the meeting. That’s the opening insurgents can easily exploit.

*Joining the board of directors for any organization should be an application process:
**This starts with a job description, list of skills needed, experience required, and responsibilities. Things such as fundraising policy (e.g. give or get) and so on should be clearly stated. It’s a commitment.
**Applicant’s expression of interest – e.g. cover letter – that covers, among other things, the applicant’s claims to be suited to the role. As with a job application, the applicant interprets his/her résumé in accord with the job description, and itemized claims regarding suitability to meet the requirements in the job description.
**Résumé.
**References...both professional, and if possible from prior boards.

==Nuts and Bolts of a Board==

===Reimbursing Board Member Travel and Meeting Expenses===
There is no overall consensus on how to approach this common question!

*One organizations pays the costs of the meeting room(s), but directors “go Dutch” on meals (or someone picks up the tab). So the organization might pay $300 to $500 for meeting space in an airport hotel, and the directors pick-up the rest, including travel to the meeting.

*Our board pays their own transportation and accommodations, and the organization pays for meals.

*Our board pays their own transportation and accommodation as well. We handle meals and venue if need be.

*We pay for the cost of transportation for our board members, meals and hotels. We do split the international costs by years. Our Board members are expected to fundraise and are a working board, with projects of their own. We pay the reasonable expenses of some projects. As well, all our board members are expected to contribute financially to the organization.

*Historically our board has met five times per year, four by phone and once in person. Board members have been responsible for covering all of their own costs for travel and hotel; the organizations pays for the meeting and meals during our meeting. The in-person meeting moves around the country, as it is held in conjunction with our annual education conference. Last month, due to growth of the organization, my board voted to start having a second in-person meeting per year--to be held in Philly, near our office. We are currently looking into an equitable way to achieve cost sharing for this static annual meeting, as the cost burden will be inequitable for board members who live near Philly vs those traveling from other parts of the country.

*Our group meets face-to-face twice per year (when possible). We make one of those meetings at our conference which takes place every two years. For the board meeting at the conference, they have already paid their own way to get there. For all other board meetings, the organization picks up the travel costs. We do have a few members who pay their own way to save the organization those fees which is much appreciated. We’ve also historically held meetings at a board member’s home; this saves significantly on food costs, plus they are able to host guests in their home. This option is likely to disappear soon, but it was good while it lasted!

*We use a monthly newsletter in between our in-person meetings. We also offer a Skype option.

*We have an alternative approach. Our board currently is not primarily tasked with fund raising - they are overseers and advisors. We cover all of their expenses to attend an annual face to face board meeting ... trying to piggyback on some other event or other travel where we can save $$$. Frankly, I prefer to look at it this way. We cover their expenses to make it easy for us to get the best advice and guidance that we can ... If they were not able to serve because they were unable to pay a few hundred dollars a year out of their pockets it would be our loss, not theirs. The in between meetings are via conference call/webinar, likely video conference call next time around.

*This is an ongoing topic for our organization. We have a fundraising board who is also expected to make a significant annual contribution. We meet via video conference ~10 times per year and in person once (in addition to monthly committee meetings, which take place via video conference). Historically we have offered a $500 reimbursement for board expenses, which include travel and lodging, while we pay for the conference and meal costs. Most of the time more than 50% of board members elected to pay for their own costs and not request any reimbursement. This past year we took on the lodging and asked board members to pay their own airfare. However, if a board member was unable to attend due to inability to afford airfare we offered reimbursement.

===Policies for Changing Board Membership - Recruiting or Replacing Board Members===

* One example of a removal policy - Any Director elected or appointed by the Board of Directors may be removed by the Board of Directors whenever in its judgment, the best interest of the corporation would be served thereby, but such removal shall be without prejudice to the contract rights, if any, of the person so removed. Directors may be removed before the end of their term by a majority vote of the Board of Directors during a Regular Meeting or Special Meeting. A Director will receive, at minimum, five (5) days notice that such a vote will be held as per Article V, Section 6. Reasons for removal may include, but are not limited to, violations of the Board Member Contract and/or Board policies including those addressing Confidentiality, Ethics, and Conflict of Interest. A successor need not be elected at the time of removal.

==Internal Links==
*[[Advisory Boards]]
*[[Bylaws and Articles]]
*[[Finding a Lawyer]]
*[[Your Organization's Name Is Important|Organization's Name]]
*[[Staff]]
*[[Tax and Finance]]
*[[Working Remotely]]
*[[Working with a Lawyer]]

Developing a Governance Board

2016-08-29T01:49:54Z

Akrokosky: /* Policies for Changing Board Membership - Recruiting or Replacing Board Members */

==How Will You Motivate Them?==

There are many reasons why individuals might choose to make a difference by supporting your organization and helping to guide it. Some of these might be:

*To contribute to a good cause
*To be involved in a dynamic grassroots organization
*To associate with other exciting and inspiring individuals
*To assist a related cause, for example, your condition might cause heart disease and someone might wish to impact heart disease in a very focused way
*A personal connection: an individual is a friend or relative of a person affected by the condition

Once you understand what motivates people to serve, you can recruit individuals you think will create the right culture for your board.

==Key Board Principles==

Genetic Alliance recognizes the importance of board development for its member groups. To help these organizations reach optimal board functioning, Genetic Alliance has developed its Organization Incubator program, based on Jim Collins' book, ''Good to Great''. This program helps participating boards adopt key organizational and operational principles, including

*Level 5 Leadership - Recognizing, supporting, and recruiting for leadership of the highest caliber.
*First Who¦Then What - Getting the right leaders involved before deciding what to do.
*Confront the Brutal Facts with Unwavering Faith - Adopting a climate of truth-telling and open communication.
*Defining - Specializing in a limited number of areas.
*Culture of Discipline Combined with an Ethic of Entrepreneurship - Combining responsibility with freedom.
*The Flywheel and the Doom Loop - Building momentum up to and beyond a breakthrough point.
*Self-identification - Understanding how what is said may be true about one's self.
*Deeper understanding - Getting to the deeper essence of an issue.
*Authentic interactions - Being real and true even when it is uncomfortable.
*Self-evaluation - Assessing whether one is achieving his or her potential.
*Everyone monitors quietness from members - Maintaining engagement from all board members.
*Everyone monitors over activity from members - Having group responsibility for balanced discussion.
*Members can't disappear - Ensuring that issues are addressed once presented.
*Dialogue and debate - Teaching board members to avoid case-building or coercion.
*A climate where truth is heard - Developing transparency on the board.
*Review/reflect on successes - Acknowledging accomplishments when they occur.
*The single most important item I put in every one of them is the requirement to review, revise and amend the charter every 6-12 months. Putting that in the charter allows you to evolve as you learn how to be more effective and avoid the usual challenge of "just leave it alone". As a requirement, it keeps the door wide open to learn and improve as you go.
*I urge you to have an EXPERIENCE EO (exempt organization) attorney review your bylaws, policies, and procedures for all possible vulnerabilities that open the door to an insurgency.

One example to put some substance to the suggestion.
There are two basic types of nonprofit corporation:
1. Membership
2. Non-Membership
Overly simplified, in membership corporations, members elect the board. In non-membership corporations, the board elects the board.
(Corporation members are not to be confused with “promotional members.” A promotional member is just a sales tool that entitles a “member” to certain benefits, but not voting rights—“membership has its benefits” as the credit card says.)Personally, I highly recommend a non-membership corporation. But both can be done well, and both can be vulnerable.

Membership corporations are required by law to conduct an official “annual meeting” at which members get to exercise their rights to elect directors and so on. (this may vary from state to state.) What’s the risk? Most annual meetings are sparsely attended. Directors and a smattering of the most loyal members attend, and annual meetings typically unfold without drama. But, if the election process isn’t very carefully prescribed and controlled...typically in advance of the meeting...all hell can break loose at an annual meeting making it resemble a Republican or Democratic National Convention. Many membership corporations are too loose with nomination and election procedures. One example: they allow nominations “from the floor” at the meeting. That’s the opening insurgents can easily exploit.

==Nuts and Bolts of a Board==

===Reimbursing Board Member Travel and Meeting Expenses===
There is no overall consensus on how to approach this common question!

*One organizations pays the costs of the meeting room(s), but directors “go Dutch” on meals (or someone picks up the tab). So the organization might pay $300 to $500 for meeting space in an airport hotel, and the directors pick-up the rest, including travel to the meeting.

*Our board pays their own transportation and accommodations, and the organization pays for meals.

*Our board pays their own transportation and accommodation as well. We handle meals and venue if need be.

*We pay for the cost of transportation for our board members, meals and hotels. We do split the international costs by years. Our Board members are expected to fundraise and are a working board, with projects of their own. We pay the reasonable expenses of some projects. As well, all our board members are expected to contribute financially to the organization.

*Historically our board has met five times per year, four by phone and once in person. Board members have been responsible for covering all of their own costs for travel and hotel; the organizations pays for the meeting and meals during our meeting. The in-person meeting moves around the country, as it is held in conjunction with our annual education conference. Last month, due to growth of the organization, my board voted to start having a second in-person meeting per year--to be held in Philly, near our office. We are currently looking into an equitable way to achieve cost sharing for this static annual meeting, as the cost burden will be inequitable for board members who live near Philly vs those traveling from other parts of the country.

*Our group meets face-to-face twice per year (when possible). We make one of those meetings at our conference which takes place every two years. For the board meeting at the conference, they have already paid their own way to get there. For all other board meetings, the organization picks up the travel costs. We do have a few members who pay their own way to save the organization those fees which is much appreciated. We’ve also historically held meetings at a board member’s home; this saves significantly on food costs, plus they are able to host guests in their home. This option is likely to disappear soon, but it was good while it lasted!

*We use a monthly newsletter in between our in-person meetings. We also offer a Skype option.

*We have an alternative approach. Our board currently is not primarily tasked with fund raising - they are overseers and advisors. We cover all of their expenses to attend an annual face to face board meeting ... trying to piggyback on some other event or other travel where we can save $$$. Frankly, I prefer to look at it this way. We cover their expenses to make it easy for us to get the best advice and guidance that we can ... If they were not able to serve because they were unable to pay a few hundred dollars a year out of their pockets it would be our loss, not theirs. The in between meetings are via conference call/webinar, likely video conference call next time around.

*This is an ongoing topic for our organization. We have a fundraising board who is also expected to make a significant annual contribution. We meet via video conference ~10 times per year and in person once (in addition to monthly committee meetings, which take place via video conference). Historically we have offered a $500 reimbursement for board expenses, which include travel and lodging, while we pay for the conference and meal costs. Most of the time more than 50% of board members elected to pay for their own costs and not request any reimbursement. This past year we took on the lodging and asked board members to pay their own airfare. However, if a board member was unable to attend due to inability to afford airfare we offered reimbursement.

===Policies for Changing Board Membership - Recruiting or Replacing Board Members===

* One example of a removal policy - Any Director elected or appointed by the Board of Directors may be removed by the Board of Directors whenever in its judgment, the best interest of the corporation would be served thereby, but such removal shall be without prejudice to the contract rights, if any, of the person so removed. Directors may be removed before the end of their term by a majority vote of the Board of Directors during a Regular Meeting or Special Meeting. A Director will receive, at minimum, five (5) days notice that such a vote will be held as per Article V, Section 6. Reasons for removal may include, but are not limited to, violations of the Board Member Contract and/or Board policies including those addressing Confidentiality, Ethics, and Conflict of Interest. A successor need not be elected at the time of removal.

==Internal Links==
*[[Advisory Boards]]
*[[Bylaws and Articles]]
*[[Finding a Lawyer]]
*[[Your Organization's Name Is Important|Organization's Name]]
*[[Staff]]
*[[Tax and Finance]]
*[[Working Remotely]]
*[[Working with a Lawyer]]

Developing a Governance Board

2016-08-29T01:48:11Z

Akrokosky: /* Key Board Principles */

==How Will You Motivate Them?==

There are many reasons why individuals might choose to make a difference by supporting your organization and helping to guide it. Some of these might be:

*To contribute to a good cause
*To be involved in a dynamic grassroots organization
*To associate with other exciting and inspiring individuals
*To assist a related cause, for example, your condition might cause heart disease and someone might wish to impact heart disease in a very focused way
*A personal connection: an individual is a friend or relative of a person affected by the condition

Once you understand what motivates people to serve, you can recruit individuals you think will create the right culture for your board.

==Key Board Principles==

Genetic Alliance recognizes the importance of board development for its member groups. To help these organizations reach optimal board functioning, Genetic Alliance has developed its Organization Incubator program, based on Jim Collins' book, ''Good to Great''. This program helps participating boards adopt key organizational and operational principles, including

*Level 5 Leadership - Recognizing, supporting, and recruiting for leadership of the highest caliber.
*First Who¦Then What - Getting the right leaders involved before deciding what to do.
*Confront the Brutal Facts with Unwavering Faith - Adopting a climate of truth-telling and open communication.
*Defining - Specializing in a limited number of areas.
*Culture of Discipline Combined with an Ethic of Entrepreneurship - Combining responsibility with freedom.
*The Flywheel and the Doom Loop - Building momentum up to and beyond a breakthrough point.
*Self-identification - Understanding how what is said may be true about one's self.
*Deeper understanding - Getting to the deeper essence of an issue.
*Authentic interactions - Being real and true even when it is uncomfortable.
*Self-evaluation - Assessing whether one is achieving his or her potential.
*Everyone monitors quietness from members - Maintaining engagement from all board members.
*Everyone monitors over activity from members - Having group responsibility for balanced discussion.
*Members can't disappear - Ensuring that issues are addressed once presented.
*Dialogue and debate - Teaching board members to avoid case-building or coercion.
*A climate where truth is heard - Developing transparency on the board.
*Review/reflect on successes - Acknowledging accomplishments when they occur.
*The single most important item I put in every one of them is the requirement to review, revise and amend the charter every 6-12 months. Putting that in the charter allows you to evolve as you learn how to be more effective and avoid the usual challenge of "just leave it alone". As a requirement, it keeps the door wide open to learn and improve as you go.
*I urge you to have an EXPERIENCE EO (exempt organization) attorney review your bylaws, policies, and procedures for all possible vulnerabilities that open the door to an insurgency.

One example to put some substance to the suggestion.
There are two basic types of nonprofit corporation:
1. Membership
2. Non-Membership
Overly simplified, in membership corporations, members elect the board. In non-membership corporations, the board elects the board.
(Corporation members are not to be confused with “promotional members.” A promotional member is just a sales tool that entitles a “member” to certain benefits, but not voting rights—“membership has its benefits” as the credit card says.)Personally, I highly recommend a non-membership corporation. But both can be done well, and both can be vulnerable.

Membership corporations are required by law to conduct an official “annual meeting” at which members get to exercise their rights to elect directors and so on. (this may vary from state to state.) What’s the risk? Most annual meetings are sparsely attended. Directors and a smattering of the most loyal members attend, and annual meetings typically unfold without drama. But, if the election process isn’t very carefully prescribed and controlled...typically in advance of the meeting...all hell can break loose at an annual meeting making it resemble a Republican or Democratic National Convention. Many membership corporations are too loose with nomination and election procedures. One example: they allow nominations “from the floor” at the meeting. That’s the opening insurgents can easily exploit.

==Nuts and Bolts of a Board==

===Reimbursing Board Member Travel and Meeting Expenses===
There is no overall consensus on how to approach this common question!

*One organizations pays the costs of the meeting room(s), but directors “go Dutch” on meals (or someone picks up the tab). So the organization might pay $300 to $500 for meeting space in an airport hotel, and the directors pick-up the rest, including travel to the meeting.

*Our board pays their own transportation and accommodations, and the organization pays for meals.

*Our board pays their own transportation and accommodation as well. We handle meals and venue if need be.

*We pay for the cost of transportation for our board members, meals and hotels. We do split the international costs by years. Our Board members are expected to fundraise and are a working board, with projects of their own. We pay the reasonable expenses of some projects. As well, all our board members are expected to contribute financially to the organization.

*Historically our board has met five times per year, four by phone and once in person. Board members have been responsible for covering all of their own costs for travel and hotel; the organizations pays for the meeting and meals during our meeting. The in-person meeting moves around the country, as it is held in conjunction with our annual education conference. Last month, due to growth of the organization, my board voted to start having a second in-person meeting per year--to be held in Philly, near our office. We are currently looking into an equitable way to achieve cost sharing for this static annual meeting, as the cost burden will be inequitable for board members who live near Philly vs those traveling from other parts of the country.

*Our group meets face-to-face twice per year (when possible). We make one of those meetings at our conference which takes place every two years. For the board meeting at the conference, they have already paid their own way to get there. For all other board meetings, the organization picks up the travel costs. We do have a few members who pay their own way to save the organization those fees which is much appreciated. We’ve also historically held meetings at a board member’s home; this saves significantly on food costs, plus they are able to host guests in their home. This option is likely to disappear soon, but it was good while it lasted!

*We use a monthly newsletter in between our in-person meetings. We also offer a Skype option.

*We have an alternative approach. Our board currently is not primarily tasked with fund raising - they are overseers and advisors. We cover all of their expenses to attend an annual face to face board meeting ... trying to piggyback on some other event or other travel where we can save $$$. Frankly, I prefer to look at it this way. We cover their expenses to make it easy for us to get the best advice and guidance that we can ... If they were not able to serve because they were unable to pay a few hundred dollars a year out of their pockets it would be our loss, not theirs. The in between meetings are via conference call/webinar, likely video conference call next time around.

*This is an ongoing topic for our organization. We have a fundraising board who is also expected to make a significant annual contribution. We meet via video conference ~10 times per year and in person once (in addition to monthly committee meetings, which take place via video conference). Historically we have offered a $500 reimbursement for board expenses, which include travel and lodging, while we pay for the conference and meal costs. Most of the time more than 50% of board members elected to pay for their own costs and not request any reimbursement. This past year we took on the lodging and asked board members to pay their own airfare. However, if a board member was unable to attend due to inability to afford airfare we offered reimbursement.

===Policies for Changing Board Membership - Recruiting or Replacing Board Members===

*

==Internal Links==
*[[Advisory Boards]]
*[[Bylaws and Articles]]
*[[Finding a Lawyer]]
*[[Your Organization's Name Is Important|Organization's Name]]
*[[Staff]]
*[[Tax and Finance]]
*[[Working Remotely]]
*[[Working with a Lawyer]]

Developing a Governance Board

2016-08-29T01:42:53Z

Akrokosky: /* Nuts and Bolts of a Board */

Audits

2016-08-29T01:39:21Z

Akrokosky: /* How Long Should it Take and What does it Cost? */

"Audit" means several things, the simplest of which is testing documentation or processes for accuracy and comprehensiveness against a report or a set of standards. The auditor examines materials and then issues an opinion as to whether what it has examined complied with what it is being tested against, and how well. Your organization will usually pay for an audit, and depending on the type and when it is requested, the preparer may also prepare financial documents for your organization, such as year-end statements and depreciation schedules.

Audits may not detect whether there is fraud in a system; they are only required to express an opinion as to whether the documentation presented gives a fair representation. An "unqualified" opinion is a statement that the organization is in compliance. A "qualified" opinion is a statement that lists issues that must be resolved before the organization is in compliance.

Your organization may be audited by an independent professional, such as a certified public accountant (CPA), or by a group to whom it reports, such as the IRS or an agency that wishes to review performance on a contract. Audits may focus on the degree to which your activities match a project plan or set of deliverable, or they may focus on accounting systems or other functions within the organization.

The federal government does not require that nonprofits have a financial audit by a CPA unless they receive funds above a threshold amount ($25,000, including "pass-through" funds, as through a state or local agency). Some states require annual audits if their revenues are above a threshold amount, and some states may accept a CPA "review" rather than an audit—this service is not as comprehensive as an audit but may cost only half as much to obtain.

Organizations that spend $300,000 or more in federal funds (including "pass-through" funds) in a year are required to have a CPA audit as described in the Office of Management and Budget's (OMB) Circular A-133.

OMB Circular A-133 is available at OMB's [http://www.whitehouse.gov/omb/circulars/a133/a133.html website]. The American Institute of Certified Public Accountants (AICPA) is an advocacy and standards body for CPAs, which publishes "generally accepted accounting principles."

==Why—and When—Should We Be Audited?==

When you meet federal or funder requirements for an audit.

Because you have had a "qualified" opinion on an audit in the past and wish to assess whether the issues have been resolved.

When you want to assess the financial management of your organization as part of an effort to strengthen it.

As a way to document, for the benefit of potential donors or funders, the strength and responsibility of your organization's financial management.

To qualify for specific sources of funding, such as the [http://www.opm.gov/cfc/ Combined Federal Campaign] or to join other organizations, such as the [http://www.nationalhealthcouncil.org/ National Health Council].

==How Long Should it Take and What does it Cost?==

An audit should never take a full year to conduct, especially for a tiny organization. Three months absolute tops.

One group's audits take approximately 2 months and they pay $7,000. Another group pays $6,500.

A cost-saving tip - We did change to a fiscal year which ends on 9/30 so that we could get better rates and availability of accountants.

Another potential cost-saving tip - What about asking a larger organization to be your fiscal agent for this event? The funds could go to them, you would pay them a small fiscal agent fee, which would be a lot less than the cost of an audit, and if they are a larger organization, they would already have an audit.
*A fiscal agent would be a good option assuming they are audited....BUT some grant funders won’t fund entities under fiscal agency.
**Fiscal agents take about 9% as an admin fee, and that may be the funders’ sticking point...if they object. In Colorado, there is a nonprofit “incubator” whose mission is to serve as fiscal agent for fledgling groups. The Colorado Nonprofit Development Center’s (www.cndc.org), only mission is fiscal agency. They charge 9%.9% also fits conveniently in most grants’ admin limits of 10%. I and several others launched a startup under CNDC, and we quickly discovered that a pitfall of fiscal agency is that most foundations would not entertain grant proposals from us.
*You might be able to get away with a “review” in lieu of a full audit. Shouldn’t hurt to ask.
*I’ve worked with [http://www.cpagg.com/ Guzman and Gray] for a number of years, a CA accounting firm, and they might be able to give you a good deal on a 990-EZ and a review.

==Internal Links==
*[[Setting up Useful Systems|Tax and Finance: Setting up Useful Systems]]
*[[Financial and Summary Statement|Tax and Finance: Financial and Summary Statement]]
*[[State-Specific Issues|Tax and Finance: State-Specific Issues]]
*[[Attaining 501(c)(3) Status (Not-For-Profit Determination)|Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)]]
*[[Accepting Donations|Tax and Finance: Accepting Donations]]
*[[Accountants|Tax and Finance: Accountants]]

Audits

2016-08-29T00:45:18Z

Akrokosky: /* How Long Should it Take and What does it Cost? */

"Audit" means several things, the simplest of which is testing documentation or processes for accuracy and comprehensiveness against a report or a set of standards. The auditor examines materials and then issues an opinion as to whether what it has examined complied with what it is being tested against, and how well. Your organization will usually pay for an audit, and depending on the type and when it is requested, the preparer may also prepare financial documents for your organization, such as year-end statements and depreciation schedules.

Audits may not detect whether there is fraud in a system; they are only required to express an opinion as to whether the documentation presented gives a fair representation. An "unqualified" opinion is a statement that the organization is in compliance. A "qualified" opinion is a statement that lists issues that must be resolved before the organization is in compliance.

Your organization may be audited by an independent professional, such as a certified public accountant (CPA), or by a group to whom it reports, such as the IRS or an agency that wishes to review performance on a contract. Audits may focus on the degree to which your activities match a project plan or set of deliverable, or they may focus on accounting systems or other functions within the organization.

The federal government does not require that nonprofits have a financial audit by a CPA unless they receive funds above a threshold amount ($25,000, including "pass-through" funds, as through a state or local agency). Some states require annual audits if their revenues are above a threshold amount, and some states may accept a CPA "review" rather than an audit—this service is not as comprehensive as an audit but may cost only half as much to obtain.

Organizations that spend $300,000 or more in federal funds (including "pass-through" funds) in a year are required to have a CPA audit as described in the Office of Management and Budget's (OMB) Circular A-133.

OMB Circular A-133 is available at OMB's [http://www.whitehouse.gov/omb/circulars/a133/a133.html website]. The American Institute of Certified Public Accountants (AICPA) is an advocacy and standards body for CPAs, which publishes "generally accepted accounting principles."

==Why—and When—Should We Be Audited?==

When you meet federal or funder requirements for an audit.

Because you have had a "qualified" opinion on an audit in the past and wish to assess whether the issues have been resolved.

When you want to assess the financial management of your organization as part of an effort to strengthen it.

As a way to document, for the benefit of potential donors or funders, the strength and responsibility of your organization's financial management.

To qualify for specific sources of funding, such as the [http://www.opm.gov/cfc/ Combined Federal Campaign] or to join other organizations, such as the [http://www.nationalhealthcouncil.org/ National Health Council].

==How Long Should it Take and What does it Cost?==

An audit should never take a full year to conduct, especially for a tiny organization. Three months absolute tops.

One group's audits take approximately 2 months and they pay $7,000. Another group pays $6,500.

A cost-saving tip - We did change to a fiscal year which ends on 9/30 so that we could get better rates and availability of accountants.

Another potential cost-saving tip - What about asking a larger organization to be your fiscal agent for this event? The funds could go to them, you would pay them a small fiscal agent fee, which would be a lot less than the cost of an audit, and if they are a larger organization, they would already have an audit.
*A fiscal agent would be a good option assuming they are audited....BUT some grant funders won’t fund entities under fiscal agency.
**Fiscal agents take about 9% as an admin fee, and that may be the funders’ sticking point...if they object.
*You might be able to get away with a “review” in lieu of a full audit. Shouldn’t hurt to ask.
*I’ve worked with [http://www.cpagg.com/ Guzman and Gray] for a number of years, a CA accounting firm, and they might be able to give you a good deal on a 990-EZ and a review.

==Internal Links==
*[[Setting up Useful Systems|Tax and Finance: Setting up Useful Systems]]
*[[Financial and Summary Statement|Tax and Finance: Financial and Summary Statement]]
*[[State-Specific Issues|Tax and Finance: State-Specific Issues]]
*[[Attaining 501(c)(3) Status (Not-For-Profit Determination)|Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)]]
*[[Accepting Donations|Tax and Finance: Accepting Donations]]
*[[Accountants|Tax and Finance: Accountants]]

Audits

2016-08-29T00:40:48Z

Akrokosky:

"Audit" means several things, the simplest of which is testing documentation or processes for accuracy and comprehensiveness against a report or a set of standards. The auditor examines materials and then issues an opinion as to whether what it has examined complied with what it is being tested against, and how well. Your organization will usually pay for an audit, and depending on the type and when it is requested, the preparer may also prepare financial documents for your organization, such as year-end statements and depreciation schedules.

Audits may not detect whether there is fraud in a system; they are only required to express an opinion as to whether the documentation presented gives a fair representation. An "unqualified" opinion is a statement that the organization is in compliance. A "qualified" opinion is a statement that lists issues that must be resolved before the organization is in compliance.

Your organization may be audited by an independent professional, such as a certified public accountant (CPA), or by a group to whom it reports, such as the IRS or an agency that wishes to review performance on a contract. Audits may focus on the degree to which your activities match a project plan or set of deliverable, or they may focus on accounting systems or other functions within the organization.

The federal government does not require that nonprofits have a financial audit by a CPA unless they receive funds above a threshold amount ($25,000, including "pass-through" funds, as through a state or local agency). Some states require annual audits if their revenues are above a threshold amount, and some states may accept a CPA "review" rather than an audit—this service is not as comprehensive as an audit but may cost only half as much to obtain.

Organizations that spend $300,000 or more in federal funds (including "pass-through" funds) in a year are required to have a CPA audit as described in the Office of Management and Budget's (OMB) Circular A-133.

OMB Circular A-133 is available at OMB's [http://www.whitehouse.gov/omb/circulars/a133/a133.html website]. The American Institute of Certified Public Accountants (AICPA) is an advocacy and standards body for CPAs, which publishes "generally accepted accounting principles."

==Why—and When—Should We Be Audited?==

When you meet federal or funder requirements for an audit.

Because you have had a "qualified" opinion on an audit in the past and wish to assess whether the issues have been resolved.

When you want to assess the financial management of your organization as part of an effort to strengthen it.

As a way to document, for the benefit of potential donors or funders, the strength and responsibility of your organization's financial management.

To qualify for specific sources of funding, such as the [http://www.opm.gov/cfc/ Combined Federal Campaign] or to join other organizations, such as the [http://www.nationalhealthcouncil.org/ National Health Council].

==How Long Should it Take and What does it Cost?==

An audit should never take a full year to conduct, especially for a tiny organization. Three months absolute tops.

One group's audits take approximately 2 months and they pay $7,000. Another group pays $6,500.

A cost-saving tip - We did change to a fiscal year which ends on 9/30 so that we could get better rates and availability of accountants.

Another potential cost-saving tip - What about asking a larger organization to be your fiscal agent for this event? The funds could go to them, you would pay them a small fiscal agent fee, which would be a lot less than the cost of an audit, and if they are a larger organization, they would already have an audit.

==Internal Links==
*[[Setting up Useful Systems|Tax and Finance: Setting up Useful Systems]]
*[[Financial and Summary Statement|Tax and Finance: Financial and Summary Statement]]
*[[State-Specific Issues|Tax and Finance: State-Specific Issues]]
*[[Attaining 501(c)(3) Status (Not-For-Profit Determination)|Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)]]
*[[Accepting Donations|Tax and Finance: Accepting Donations]]
*[[Accountants|Tax and Finance: Accountants]]

Accountants

2016-08-29T00:37:04Z

Akrokosky:

A variety of situations exist in which an organization might find an accountant useful. Some use one only on a yearly basis, others more often. They can also be employed as paid staff, or possibly on a volunteer basis. Some accountants even specialize in non-profit organizations. It is important to make sure you're registered in states that require it (if you make >$100,000 for example).

One option is to have a part time bookkeeper who works with an offsite accountant <10 hours a week.

It is also quite possible to start with a volunteer or part time accountant and transition to a full time accountant, part time controller, with an outside firm coming in yearly.

An organization with a medium small annual could have a part time bookkeeper, a part time finance director, a consulting arrangement with an accountant, and an annual full blown audit, while the treasurer looks over the books monthly.

There are two yearly options depending on how large the organization is and what different states require. A CPA can do a yearly review, or a full blown audit yearly might be necessary.

Outsourcing accounting completely is an alternative for larger organizations, but a financial committee and annual audits usually come along with this.

==Internal Links==
*[[Setting up Useful Systems|Tax and Finance: Setting up Useful Systems]]
*[[Financial and Summary Statement|Tax and Finance: Financial and Summary Statement]]
*[[State-Specific Issues|Tax and Finance: State-Specific Issues]]
*[[Attaining 501(c)(3) Status (Not-For-Profit Determination)|Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)]]
*[[Accepting Donations|Tax and Finance: Accepting Donations]]
*[[Audits|Tax and Finance: Audits]]

Accountants

2016-08-29T00:35:24Z

Akrokosky:

A variety of situations exist in which an organization might find an accountant useful. Some use one only on a yearly basis, others more often. They can also be employed as paid staff, or possibly on a volunteer basis. Some accountants even specialize in non-profit organizations. It is important to make sure you're registered in states that require it (if you make >$100,000 for example).

One option is to have a part time bookkeeper who works with an offsite accountant <10 hours a week.

It is also quite possible to start with a volunteer or part time accountant and transition to a full time accountant, part time controller, with an outside firm coming in yearly.

An organization with a medium small annual could have a part time bookkeeper, a part time finance director, a consulting arrangement with an accountant, and an annual full blown audit, while the treasurer looks over the books monthly.

There are two yearly options depending on how large the organization is and what different states require. A CPA can do a yearly review, or a full blown audit yearly might be necessary. An audit should never take a full year to conduct, especially for a tiny organization. Three months absolute tops.

Outsourcing accounting completely is an alternative for larger organizations, but a financial committee and annual audits usually come along with this.

==Internal Links==
*[[Setting up Useful Systems|Tax and Finance: Setting up Useful Systems]]
*[[Financial and Summary Statement|Tax and Finance: Financial and Summary Statement]]
*[[State-Specific Issues|Tax and Finance: State-Specific Issues]]
*[[Attaining 501(c)(3) Status (Not-For-Profit Determination)|Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)]]
*[[Accepting Donations|Tax and Finance: Accepting Donations]]
*[[Audits|Tax and Finance: Audits]]

Insurance and Policies

2016-08-29T00:31:12Z

Akrokosky:

When starting an organization, there are many policies to craft and organizational decisions to be made such as what types of insurance to carry. On this page, you will find anecdotes and tips from others who have been in your situation.

====Liability Insurance====

*Our liability insurance is through a group and specific for nonprofits. You can access their website [http://www.musilli.biz/ here] which also includes other helpful links.

*Our organization just received a 501(c)(3) status in March and we elected to purchase Directors and Officers insurance immediately. However, our insurance agent did not think it was necessary until we actually began spending the organization’s money. As it turned out we immediately received a donation to fund a research project so in our case we were glad we took the route we did. Our policy is through Traveler’s Insurance and it cost about $900 a year.

====Examples of Liability Insurance Companies for Non-Profits====
There are many places where non-profits can find insurance:
*[http://www.niac.org/ Nonprofits' Insurance Alliance of California] - One of the major liability insurance providers for California-based non-profits

====Do you know of volunteer service efforts being cut or limited due to insurance demands?====
Are you aware of any self-help group that has been hurt or possibly destroyed by insurance demands being placed on their community volunteer efforts? While traditional volunteer service programs are uneffected because hospitals and agencies provide insurance for their volunteers, we sense an increasing number of volunteer-run self-help support groups are now being blocked from using public, government or church/temple meeting room space, or doing volunteer work at such sites because they are being told they must produce proof of their having their own insurance coverage.

If you know of instances where volunteer service efforts (including running self-help support groups) are being cut back or eliminated because of insurance or related demands, kindly consider adding your story about how insurance demands are harming volunteer intiatives at: http://www.energizeinc.com/hot/2010/10aug.html
From www. selfhelpgroups.org

====D & O Insurance====
With limited budgets and perhaps all volunteer staff, groups sometimes wonder if D & O insurance is a necessary expense. Many groups have shared that it seems like a necessary expense regardless of the size of the organization and number of people on staff. Some individuals won't join a board unless the organization carries this insurance. For organizations that operate in a state that is different from where they incorporated, they've been able to purchase D & O insurance from a local insurance company.

Building a Website

2016-08-29T00:23:45Z

Akrokosky:

Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot of cases, they can be a first or early source of information on genetic disorders. A well-designed website that gets a lot of traffic can be an enormous asset. There are no hard and fast standards as far as content. However, Genetic Alliance's Access to Credible Genetics Resources program has toolkits addressing this, and many universities also have suggestions and scales to rate resources.

==Tips Before You Start==

There are dozens of books and websites that discuss the best way to design a site for specific purposes, and some of the most important guidelines are these:

*Use images carefully, and pay attention to their size—they should load easily even using dial-up connections.
*By all means, use color as a design element, but for sections of the page where there are chunks of text, the most legible combination is black text on a white background.
*Consider accessibility issues—can a user with low vision using a voice browser understand the way information is presented on the page? How about a color-blind user?
*Avoid animations and movies. Animations distract users. Flash is a popular software for creating animated websites or serving miniature movies, but it has virtually no accessibility features for sensory-impaired individuals. Using these techniques on your organization's site will limit your audience and may detract from your website's purpose: to share information and link members.
*Keep it simple. The simpler your site is, the easier it is for your users—and for the people who update it.

==Making a Website==

===Web Site Hosting===

If your organization is interested in building your own web site, you'll need to choose an appropriate 'host.' In deciding what host to use, it's important to consider what components you want your site to have such as text and graphics only or extras such as a store or message boards? Other things to think about include: Does the host offer the following - mysql - for a database? PHP - for making dynamic websites? or Email accounts? How much bandwidth will you be allowed each month? How much storage will you have on the website host? How good is technical support? Is it by phone or email? How much will it cost per month?

Here are some companies that other organizations use:
*[http://www.GoDaddy.com GoDaddy] - "GoDaddy are OK but as a web host they are not one of the best or the most reliable.
One common problem is they make it very difficult for the customer to transfer domain names - The web address of your website to another web site host. Another big problem is spam.. and we all hate spam. Some customers have complained that there website name (domain name) is easy to use by hackers and spammers because they charge extra for privacy and security tools. Now don't get me wrong I am not saying don't go there, because they have a lot of happy customers, Just be careful."
*[http://www.webtrix.com Webtrix] - "Very reliable and helpful. Easy to get in contact with when you have questions."
*[http://www.datarealm.com/ Datarealm Internet Services] - "We have used Datarealm Internet Services for years and been very happy with them. I think their non-profit rate is about $49.75 for six months."
*[http://www.aspwebhosting.com ASP Webhosting]
*[http://www.rackspace.com Rackspace] - "I've found them responsive and their web interface is very easy to use. In addition, they have a lot of room for expansion and offer many backup options to keep your website up and running."

===Web Site Designers===

Many organizations are finding designers to build intricate sites for them, in order to provide sophisticated services like message boards and databases of resources for disorders. Hiring a web designer to do freelance work is a reasonable option for advocacy organizations, especially if there is not enough work or monetary resources to support a full time employee. In order to circumvent this problem, it might be possible for multiple orgs to hire a professional and give them work on a contractual basis so they would have a full workload. It would be also a great introduction for them into the non-profit sector. Another option is to ask volunteers to build and maintain the website. This could work for specific sites and orgs, but volunteers usually work on a very flexible schedules, and may not be able to respond to immediate website needs. Consistency is the important thing. It is extremely beneficial if the website is constructed with solid code and updates are made regularly.

Many web designers have websites, like this:
*http://www.yourgraphicsguy.com
*http://www.webtrix.com (Good for hosting and designing complex features like shopping carts, and you can do maintenance yourself.)
*http://www.kineticsolutionsservices.com/
*http://www.novelprojects.com/
*http://www.studio162.com

Here's a list of companies that other disease-specific organizations have used and approved of their work:

*[http://www.aimg.com Accurate Imaging]
*[http://www.cermack.com Cermack]
*[http://www.firespring.org/ Firespring] - One group said "The top selling points for us included their beautiful responsive design templates, their focus on nonprofits and integrated tools like email marketing, donor management and fundraising campaigns. I have only good things to say about this company. Their customer support is fantastic." And another added "We also started using Firespring just last year and we have gone from the expense of needing to use a professional Webmaster to add news and make adjustments to our site to now where a few of us are able to keep up with our site, add calendar events, News, and the latest research on HSP and PLS for our community. The system is really easy to work with and our costs have gone down dramatically."
*We hired a wonderful company called iFactory, based in Boston. Kimberly Emrick was our contact and she was outstanding. They developed a very good understanding of accessibility issues as well, since our agency worked with people who are deafblind.

==Using a Content Management System==

Content Management Systems can be both a great help and a great hinderance in designing a web site. With some content management systems, groups find them to be inflexible and feel "trapped" in not being able to meet their needs, while other content managemen systems work well. Here are some tips from groups that use them:

*Joomla is a super system for developing a CMS website. Best of all it is free to use. It has a huge community of users, with a massive range and style of websites. The joy of setting up a website using it is that the site can be as simple or complex as you need, and the site can grow with you, by adding plug-ins and other tools to meet your needs. Lots of templates to get you going so if you find one you like, you can be up and running in under an hour. For a small website it can be a bit big, but on the whole it is great.

*A small site can be developed using WordPress, although normally used for blogging, Wordpress is a very powerful CMS tool. You can have a play with wordpress at no cost by going to [http://wordpress.com here]. You can sign up and create a site on the wordpress servers, and if it works for your needs, you can go to [http://wordpress.org here] to download a copy to install on your own server. It is also free.

*A few basic requirements you will need to check with your web hosting service no matter what CMS system you choose to use:
**Ask if you have PHP - version 5 is best but you can get away with a lowerversion numnber (not recomended though).
**Also you need a MYSQL Database on your hosting package.
**Your Hosting also needs to be on a LINUX server (Not a windows server.)
**If your hostimng meets the above requirements you are fine, otherwise for any free CMS you may need to switch or upgrade your web hosting package.

==Evaluating Your Site==
It is a good idea to evaluate your website every once in a while to see if it is functioning at its highest potential. There are some services out there that can help you with your evaluation.

WebXACT (formerly BOBBY) is a web-based service that checks sites for accessibility. It evaluates your site and lists recommendations to improve accessibility. You can ask it to use the World Wide Web Consortium Guidelines (available at W3.org) or [http://www.access-board.gov/sec508/e-learning.htm/Section 508 Guidelines].

W3 and Section 508 rules are for format. Consider guidelines for content, as well. We recommend [http://www.hon.ch/HONcode/Guidelines/guidelines.html] on the Net Foundation—Code of Conduct. This code has guidelines for authority, accountability, and attribution that form a solid basis not only for designing your site's approach to information but for evaluating other sites as well.

== Evaluating Resources ==
One of the main services advocacy organizations can offer through their print and electronic tools is providing quality and accurate information about a condition as well as helping people sort through health information found from various other sources.

Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the [http://www.trustortrash.org/developer ''Trust It or Trash It?''] tool.

Your members may have many places they find information other than your organization. Encourage them to use the [http://www.trustortrash.org ''Trust It or Trash It?''] tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more visit [http://www.youtube.com/geneticalliance#p/u/6/IKa7BlKpPZg Genetic Alliance's YouTube Channel].

==Factors to Consider==
*The complexity of the site design
*Resources available to the organization for site design
*The cost of professional site help
*The potential of the site for growth and change (especially complicated additions like message boards and shopping carts)
*Location! Prices for web design services tend to vary; they are generally higher near large cities.
*Some designers pay per page, and often prices vary based on the amount of coding that needs to be done.
*It is always worth writing to the CEO of the hosting company you like the look of. Often you may either get a good deal or an offer of free hosting.
*On the subject of domain names... A lot of nasty people may see your domain getting traffic and set up a copy cat advertising domain trading on the miss typing of the charity domain. They set up a single page advert site. It is worth investing in the main names for your site to avoid this situation and to protect your intellectual property.

 It's worth shopping around based on your organization's needs!

While on the topic of intellectual property rights, it is important to note that it is also possible for people to steal images that you post to your site. Thus, it is important to consider the possible measures that can be to taken to reduce or eliminate the likelihood this unfortunate circumstance could occur. Below are some thoughts on this, along with some mechanisms organizations utilized to keep their photos protected.

Jean Pickford

Foundation for Ichthyosis & Related Skin Types, Inc.

“ The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) represents patients with a very visible and disfiguring genetic skin disease. We have consented photos on our website that show the various forms of the disease, ranging from newborns to adults. There have been occasions when our photos have been copied from our website and posted on social media sites to gain attention/followers. In one case last year, a photo of a harlequin ichthyosis newborn was taken from our site and posted on Facebook, which went viral (i.e., one like = one prayer for this baby) with more than 2 million likes & more than 30,000 comments. Needless to say, some of the comments were nasty, like “this is a reptile baby” or “it’s an alien, put them out of their misery.”

Some of us here at FIRST feel very strongly that it is our duty to protect these photos from any exploitation on behalf of those we serve, and thus, they should be “watermarked.” However, others feel very strongly that a watermark detracts from the purpose of the photo in helping physicians, families, and others who are trying to learn about the disease.

In discussing it with some of our board members and web admins, we have added a “blocker” that pops up when you right click any photos on our site as well as a watermark on the images, so if they are taken without permission, they can’t be used. An example of this can be viewed at: [http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Harlequin-Ichthyosis/page_id/547 FIRST Harlequin Ichthyosis].”

Janet Long

US Hereditary Angioedema Center

“The website where we host our images is: [https://www.haeimages.com HaeImages]. With so many players in our “HAE space”, we found our web site images appearing in good places and bad. Therefore, we organized an image repository where patients could donate images and we could somewhat handle their use via the sale of them; the sales could in return support new research.

It has been as successful as I could have hoped, I think, in keeping our images safe.
However, there are still images taken from our web site (we did not watermark them, but instead trademarked the web site and this is usually enough to scare folks off from stealing….)”

“For the specific issue of a forum, some web development companies could be a good fit for advising on this. I'd strongly recommend finding a stable off the shelf solution rather than trying to roll your own unless you have mountains of money to throw at it. If you identify the product that you want to use, then sometimes the company that develops the product can recommend experienced implementation people.”

Christy Collins

M-CM Network

==Search Engine Optimization and Helping People Find Your Site==

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites.

===Generate A Keyword List===

The first thing to do is generate a list of keywords, or search terms, to target. This list may include all of the disease/syndrome names that your organization covers (including acronyms, abbreviations and variants), significant symptoms or signs, and anything else that a person might punch into a search engine when they are looking for the information that your site offers. You may want to survey some new members to see if they looked for you via search engine and if they remember what words they searched for. Once you have this list, sort it by relevance.

===HTML tags for SEO===

Important html tags for search engine optimization are fairly simple.
* The most important tag is <title>. The <title> tag doesn't actually appear on your web page, but rather in the top of your browser window. It will be used as the title of your search result listing on Google and the default title if your page is shared on Facebook.
* Next are heading tags: <pre><h1>, <h2>, <h3></pre> With h1 being the most important. Survey your site's content for places that you can sensibly fit your keywords into these tags.
* Set a meta description tag for the most important pages on your site and consider using your keywords here. Like the <title> tag, the description tag doesn't display on the site, but it has a lot of utility for other sites that parse your content. Besides search rank, Google uses it to display in it's search results. It is used on Facebook when your page is shared on a user's wall. This tag looks like: <pre><meta name="description" content="My page description." /></pre> Google will display the first 150 characters in the content attribute, you should try to keep the size of your description in that range.

===Incoming Links===

There is much nastiness on the internet due to the fact that incoming links boost search rank. Fortunately for many of us, our search terms are so obscure that we don't have a lot of competition for rank, and a little bit of effort with integrity should go a long way. The most important detail to know is that linking a keyword to your site will be much more powerful than linking a generic phrase like "click here" or "link".
Some simple suggestions:
- If you get media publicity, make sure that any internet version of the article correctly links to your site. If it doesn't, politely request that the link be added. A newspaper is not obligated to to do this, but it's worth asking.
- If you have affected families, fundraisers or board members who have their own blogs or websites, suggest ways that they could link to you if they are not already doing so. You may even want to offer badges that link to your site.

===Other Traffic===

* Facebook has potential for generating valuable traffic to your site, although most Facebook linking will not affect your Google search rank. Add Facebook "like" and "share" buttons to your site. Take a look at the default content that Facebook displays when a page on your site is shared to verify that it's accurate and helpful. This will consist of your <title> tag and meta description OR largest block of paragraph content if you don't have a meta description.
* Wikipedia links also do not contribute to search engine rank. However, when searching on medical terms and syndrome names, Wikipedia results often come up in the top three results. Make sure your organization is linked to from the links section of the wikipedia page/s for your disease. If your disease doesn't have a wikipedia page, make one.
* Be sure your disorder is listed on the appropriate databases, that the information is current and accurate and that your advocacy site is linked to. [[Information about Rare Genetic Diseases|Disease Databases]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Building a Website

2016-08-29T00:23:03Z

Akrokosky:

Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot of cases, they can be a first or early source of information on genetic disorders. A well-designed website that gets a lot of traffic can be an enormous asset. There are no hard and fast standards as far as content. However, Genetic Alliance's Access to Credible Genetics Resources program has toolkits addressing this, and many universities also have suggestions and scales to rate resources.

==Tips Before You Start==

There are dozens of books and websites that discuss the best way to design a site for specific purposes, and some of the most important guidelines are these:

*Use images carefully, and pay attention to their size—they should load easily even using dial-up connections.
*By all means, use color as a design element, but for sections of the page where there are chunks of text, the most legible combination is black text on a white background.
*Consider accessibility issues—can a user with low vision using a voice browser understand the way information is presented on the page? How about a color-blind user?
*Avoid animations and movies. Animations distract users. Flash is a popular software for creating animated websites or serving miniature movies, but it has virtually no accessibility features for sensory-impaired individuals. Using these techniques on your organization's site will limit your audience and may detract from your website's purpose: to share information and link members.
*Keep it simple. The simpler your site is, the easier it is for your users—and for the people who update it.

==Making a Website==

===Web Site Hosting===

If your organization is interested in building your own web site, you'll need to choose an appropriate 'host.' In deciding what host to use, it's important to consider what components you want your site to have such as text and graphics only or extras such as a store or message boards? Other things to think about include: Does the host offer the following - mysql - for a database? PHP - for making dynamic websites? or Email accounts? How much bandwidth will you be allowed each month? How much storage will you have on the website host? How good is technical support? Is it by phone or email? How much will it cost per month?

Here are some companies that other organizations use:
*[http://www.GoDaddy.com GoDaddy] - "GoDaddy are OK but as a web host they are not one of the best or the most reliable.
One common problem is they make it very difficult for the customer to transfer domain names - The web address of your website to another web site host. Another big problem is spam.. and we all hate spam. Some customers have complained that there website name (domain name) is easy to use by hackers and spammers because they charge extra for privacy and security tools. Now don't get me wrong I am not saying don't go there, because they have a lot of happy customers, Just be careful."
*[http://www.webtrix.com Webtrix] - "Very reliable and helpful. Easy to get in contact with when you have questions."
*[http://www.datarealm.com/ Datarealm Internet Services] - "We have used Datarealm Internet Services for years and been very happy with them. I think their non-profit rate is about $49.75 for six months."
*[http://www.aspwebhosting.com ASP Webhosting]
*[http://www.rackspace.com Rackspace] - "I've found them responsive and their web interface is very easy to use. In addition, they have a lot of room for expansion and offer many backup options to keep your website up and running."

===Web Site Designers===

Many organizations are finding designers to build intricate sites for them, in order to provide sophisticated services like message boards and databases of resources for disorders. Hiring a web designer to do freelance work is a reasonable option for advocacy organizations, especially if there is not enough work or monetary resources to support a full time employee. In order to circumvent this problem, it might be possible for multiple orgs to hire a professional and give them work on a contractual basis so they would have a full workload. It would be also a great introduction for them into the non-profit sector. Another option is to ask volunteers to build and maintain the website. This could work for specific sites and orgs, but volunteers usually work on a very flexible schedules, and may not be able to respond to immediate website needs. Consistency is the important thing. It is extremely beneficial if the website is constructed with solid code and updates are made regularly.

Many web designers have websites, like this:
*http://www.yourgraphicsguy.com
*http://www.webtrix.com (Good for hosting and designing complex features like shopping carts, and you can do maintenance yourself.)
*http://www.kineticsolutionsservices.com/
*http://www.novelprojects.com/
*http://www.studio162.com

Here's a list of companies that other disease-specific organizations have used and approved of their work:

*[http://www.aimg.com Accurate Imaging]
*[http://www.cermack.com]
*[http://www.firespring.org/ Firespring] - One group said "The top selling points for us included their beautiful responsive design templates, their focus on nonprofits and integrated tools like email marketing, donor management and fundraising campaigns. I have only good things to say about this company. Their customer support is fantastic." And another added "We also started using Firespring just last year and we have gone from the expense of needing to use a professional Webmaster to add news and make adjustments to our site to now where a few of us are able to keep up with our site, add calendar events, News, and the latest research on HSP and PLS for our community. The system is really easy to work with and our costs have gone down dramatically."
*We hired a wonderful company called iFactory, based in Boston. Kimberly Emrick was our contact and she was outstanding. They developed a very good understanding of accessibility issues as well, since our agency worked with people who are deafblind.

==Using a Content Management System==

Content Management Systems can be both a great help and a great hinderance in designing a web site. With some content management systems, groups find them to be inflexible and feel "trapped" in not being able to meet their needs, while other content managemen systems work well. Here are some tips from groups that use them:

*Joomla is a super system for developing a CMS website. Best of all it is free to use. It has a huge community of users, with a massive range and style of websites. The joy of setting up a website using it is that the site can be as simple or complex as you need, and the site can grow with you, by adding plug-ins and other tools to meet your needs. Lots of templates to get you going so if you find one you like, you can be up and running in under an hour. For a small website it can be a bit big, but on the whole it is great.

*A small site can be developed using WordPress, although normally used for blogging, Wordpress is a very powerful CMS tool. You can have a play with wordpress at no cost by going to [http://wordpress.com here]. You can sign up and create a site on the wordpress servers, and if it works for your needs, you can go to [http://wordpress.org here] to download a copy to install on your own server. It is also free.

*A few basic requirements you will need to check with your web hosting service no matter what CMS system you choose to use:
**Ask if you have PHP - version 5 is best but you can get away with a lowerversion numnber (not recomended though).
**Also you need a MYSQL Database on your hosting package.
**Your Hosting also needs to be on a LINUX server (Not a windows server.)
**If your hostimng meets the above requirements you are fine, otherwise for any free CMS you may need to switch or upgrade your web hosting package.

==Evaluating Your Site==
It is a good idea to evaluate your website every once in a while to see if it is functioning at its highest potential. There are some services out there that can help you with your evaluation.

WebXACT (formerly BOBBY) is a web-based service that checks sites for accessibility. It evaluates your site and lists recommendations to improve accessibility. You can ask it to use the World Wide Web Consortium Guidelines (available at W3.org) or [http://www.access-board.gov/sec508/e-learning.htm/Section 508 Guidelines].

W3 and Section 508 rules are for format. Consider guidelines for content, as well. We recommend [http://www.hon.ch/HONcode/Guidelines/guidelines.html] on the Net Foundation—Code of Conduct. This code has guidelines for authority, accountability, and attribution that form a solid basis not only for designing your site's approach to information but for evaluating other sites as well.

== Evaluating Resources ==
One of the main services advocacy organizations can offer through their print and electronic tools is providing quality and accurate information about a condition as well as helping people sort through health information found from various other sources.

Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the [http://www.trustortrash.org/developer ''Trust It or Trash It?''] tool.

Your members may have many places they find information other than your organization. Encourage them to use the [http://www.trustortrash.org ''Trust It or Trash It?''] tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more visit [http://www.youtube.com/geneticalliance#p/u/6/IKa7BlKpPZg Genetic Alliance's YouTube Channel].

==Factors to Consider==
*The complexity of the site design
*Resources available to the organization for site design
*The cost of professional site help
*The potential of the site for growth and change (especially complicated additions like message boards and shopping carts)
*Location! Prices for web design services tend to vary; they are generally higher near large cities.
*Some designers pay per page, and often prices vary based on the amount of coding that needs to be done.
*It is always worth writing to the CEO of the hosting company you like the look of. Often you may either get a good deal or an offer of free hosting.
*On the subject of domain names... A lot of nasty people may see your domain getting traffic and set up a copy cat advertising domain trading on the miss typing of the charity domain. They set up a single page advert site. It is worth investing in the main names for your site to avoid this situation and to protect your intellectual property.

 It's worth shopping around based on your organization's needs!

While on the topic of intellectual property rights, it is important to note that it is also possible for people to steal images that you post to your site. Thus, it is important to consider the possible measures that can be to taken to reduce or eliminate the likelihood this unfortunate circumstance could occur. Below are some thoughts on this, along with some mechanisms organizations utilized to keep their photos protected.

Jean Pickford

Foundation for Ichthyosis & Related Skin Types, Inc.

“ The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) represents patients with a very visible and disfiguring genetic skin disease. We have consented photos on our website that show the various forms of the disease, ranging from newborns to adults. There have been occasions when our photos have been copied from our website and posted on social media sites to gain attention/followers. In one case last year, a photo of a harlequin ichthyosis newborn was taken from our site and posted on Facebook, which went viral (i.e., one like = one prayer for this baby) with more than 2 million likes & more than 30,000 comments. Needless to say, some of the comments were nasty, like “this is a reptile baby” or “it’s an alien, put them out of their misery.”

Some of us here at FIRST feel very strongly that it is our duty to protect these photos from any exploitation on behalf of those we serve, and thus, they should be “watermarked.” However, others feel very strongly that a watermark detracts from the purpose of the photo in helping physicians, families, and others who are trying to learn about the disease.

In discussing it with some of our board members and web admins, we have added a “blocker” that pops up when you right click any photos on our site as well as a watermark on the images, so if they are taken without permission, they can’t be used. An example of this can be viewed at: [http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Harlequin-Ichthyosis/page_id/547 FIRST Harlequin Ichthyosis].”

Janet Long

US Hereditary Angioedema Center

“The website where we host our images is: [https://www.haeimages.com HaeImages]. With so many players in our “HAE space”, we found our web site images appearing in good places and bad. Therefore, we organized an image repository where patients could donate images and we could somewhat handle their use via the sale of them; the sales could in return support new research.

It has been as successful as I could have hoped, I think, in keeping our images safe.
However, there are still images taken from our web site (we did not watermark them, but instead trademarked the web site and this is usually enough to scare folks off from stealing….)”

“For the specific issue of a forum, some web development companies could be a good fit for advising on this. I'd strongly recommend finding a stable off the shelf solution rather than trying to roll your own unless you have mountains of money to throw at it. If you identify the product that you want to use, then sometimes the company that develops the product can recommend experienced implementation people.”

Christy Collins

M-CM Network

==Search Engine Optimization and Helping People Find Your Site==

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites.

===Generate A Keyword List===

The first thing to do is generate a list of keywords, or search terms, to target. This list may include all of the disease/syndrome names that your organization covers (including acronyms, abbreviations and variants), significant symptoms or signs, and anything else that a person might punch into a search engine when they are looking for the information that your site offers. You may want to survey some new members to see if they looked for you via search engine and if they remember what words they searched for. Once you have this list, sort it by relevance.

===HTML tags for SEO===

Important html tags for search engine optimization are fairly simple.
* The most important tag is <title>. The <title> tag doesn't actually appear on your web page, but rather in the top of your browser window. It will be used as the title of your search result listing on Google and the default title if your page is shared on Facebook.
* Next are heading tags: <pre><h1>, <h2>, <h3></pre> With h1 being the most important. Survey your site's content for places that you can sensibly fit your keywords into these tags.
* Set a meta description tag for the most important pages on your site and consider using your keywords here. Like the <title> tag, the description tag doesn't display on the site, but it has a lot of utility for other sites that parse your content. Besides search rank, Google uses it to display in it's search results. It is used on Facebook when your page is shared on a user's wall. This tag looks like: <pre><meta name="description" content="My page description." /></pre> Google will display the first 150 characters in the content attribute, you should try to keep the size of your description in that range.

===Incoming Links===

There is much nastiness on the internet due to the fact that incoming links boost search rank. Fortunately for many of us, our search terms are so obscure that we don't have a lot of competition for rank, and a little bit of effort with integrity should go a long way. The most important detail to know is that linking a keyword to your site will be much more powerful than linking a generic phrase like "click here" or "link".
Some simple suggestions:
- If you get media publicity, make sure that any internet version of the article correctly links to your site. If it doesn't, politely request that the link be added. A newspaper is not obligated to to do this, but it's worth asking.
- If you have affected families, fundraisers or board members who have their own blogs or websites, suggest ways that they could link to you if they are not already doing so. You may even want to offer badges that link to your site.

===Other Traffic===

* Facebook has potential for generating valuable traffic to your site, although most Facebook linking will not affect your Google search rank. Add Facebook "like" and "share" buttons to your site. Take a look at the default content that Facebook displays when a page on your site is shared to verify that it's accurate and helpful. This will consist of your <title> tag and meta description OR largest block of paragraph content if you don't have a meta description.
* Wikipedia links also do not contribute to search engine rank. However, when searching on medical terms and syndrome names, Wikipedia results often come up in the top three results. Make sure your organization is linked to from the links section of the wikipedia page/s for your disease. If your disease doesn't have a wikipedia page, make one.
* Be sure your disorder is listed on the appropriate databases, that the information is current and accurate and that your advocacy site is linked to. [[Information about Rare Genetic Diseases|Disease Databases]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Building a Website

2016-08-29T00:20:33Z

Akrokosky:

Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot of cases, they can be a first or early source of information on genetic disorders. A well-designed website that gets a lot of traffic can be an enormous asset. There are no hard and fast standards as far as content. However, Genetic Alliance's Access to Credible Genetics Resources program has toolkits addressing this, and many universities also have suggestions and scales to rate resources.

==Tips Before You Start==

There are dozens of books and websites that discuss the best way to design a site for specific purposes, and some of the most important guidelines are these:

*Use images carefully, and pay attention to their size—they should load easily even using dial-up connections.
*By all means, use color as a design element, but for sections of the page where there are chunks of text, the most legible combination is black text on a white background.
*Consider accessibility issues—can a user with low vision using a voice browser understand the way information is presented on the page? How about a color-blind user?
*Avoid animations and movies. Animations distract users. Flash is a popular software for creating animated websites or serving miniature movies, but it has virtually no accessibility features for sensory-impaired individuals. Using these techniques on your organization's site will limit your audience and may detract from your website's purpose: to share information and link members.
*Keep it simple. The simpler your site is, the easier it is for your users—and for the people who update it.

==Making a Website==

===Web Site Hosting===

If your organization is interested in building your own web site, you'll need to choose an appropriate 'host.' In deciding what host to use, it's important to consider what components you want your site to have such as text and graphics only or extras such as a store or message boards? Other things to think about include: Does the host offer the following - mysql - for a database? PHP - for making dynamic websites? or Email accounts? How much bandwidth will you be allowed each month? How much storage will you have on the website host? How good is technical support? Is it by phone or email? How much will it cost per month?

Here are some companies that other organizations use:
*[http://www.GoDaddy.com GoDaddy] - "GoDaddy are OK but as a web host they are not one of the best or the most reliable.
One common problem is they make it very difficult for the customer to transfer domain names - The web address of your website to another web site host. Another big problem is spam.. and we all hate spam. Some customers have complained that there website name (domain name) is easy to use by hackers and spammers because they charge extra for privacy and security tools. Now don't get me wrong I am not saying don't go there, because they have a lot of happy customers, Just be careful."
*[http://www.webtrix.com Webtrix] - "Very reliable and helpful. Easy to get in contact with when you have questions."
*[http://www.datarealm.com/ Datarealm Internet Services] - "We have used Datarealm Internet Services for years and been very happy with them. I think their non-profit rate is about $49.75 for six months."
*[http://www.aspwebhosting.com ASP Webhosting]
*[http://www.rackspace.com Rackspace] - "I've found them responsive and their web interface is very easy to use. In addition, they have a lot of room for expansion and offer many backup options to keep your website up and running."

===Web Site Designers===

Many organizations are finding designers to build intricate sites for them, in order to provide sophisticated services like message boards and databases of resources for disorders. Hiring a web designer to do freelance work is a reasonable option for advocacy organizations, especially if there is not enough work or monetary resources to support a full time employee. In order to circumvent this problem, it might be possible for multiple orgs to hire a professional and give them work on a contractual basis so they would have a full workload. It would be also a great introduction for them into the non-profit sector. Another option is to ask volunteers to build and maintain the website. This could work for specific sites and orgs, but volunteers usually work on a very flexible schedules, and may not be able to respond to immediate website needs. Consistency is the important thing. It is extremely beneficial if the website is constructed with solid code and updates are made regularly.

Many web designers have websites, like this:
*http://www.yourgraphicsguy.com
*http://www.webtrix.com (Good for hosting and designing complex features like shopping carts, and you can do maintenance yourself.)
*http://www.kineticsolutionsservices.com/
*http://www.novelprojects.com/
*http://www.studio162.com

Here's a list of companies that other disease-specific organizations have used and approved of their work:

*[www.aimg.com Accurate Imaging]
*[http://www.firespring.org/ Firespring] - One group said "The top selling points for us included their beautiful responsive design templates, their focus on nonprofits and integrated tools like email marketing, donor management and fundraising campaigns. I have only good things to say about this company. Their customer support is fantastic." And another added "We also started using Firespring just last year and we have gone from the expense of needing to use a professional Webmaster to add news and make adjustments to our site to now where a few of us are able to keep up with our site, add calendar events, News, and the latest research on HSP and PLS for our community. The system is really easy to work with and our costs have gone down dramatically."
*We hired a wonderful company called iFactory, based in Boston. Kimberly Emrick was our contact and she was outstanding. They developed a very good understanding of accessibility issues as well, since our agency worked with people who are deafblind.

==Using a Content Management System==

Content Management Systems can be both a great help and a great hinderance in designing a web site. With some content management systems, groups find them to be inflexible and feel "trapped" in not being able to meet their needs, while other content managemen systems work well. Here are some tips from groups that use them:

*Joomla is a super system for developing a CMS website. Best of all it is free to use. It has a huge community of users, with a massive range and style of websites. The joy of setting up a website using it is that the site can be as simple or complex as you need, and the site can grow with you, by adding plug-ins and other tools to meet your needs. Lots of templates to get you going so if you find one you like, you can be up and running in under an hour. For a small website it can be a bit big, but on the whole it is great.

*A small site can be developed using WordPress, although normally used for blogging, Wordpress is a very powerful CMS tool. You can have a play with wordpress at no cost by going to [http://wordpress.com here]. You can sign up and create a site on the wordpress servers, and if it works for your needs, you can go to [http://wordpress.org here] to download a copy to install on your own server. It is also free.

*A few basic requirements you will need to check with your web hosting service no matter what CMS system you choose to use:
**Ask if you have PHP - version 5 is best but you can get away with a lowerversion numnber (not recomended though).
**Also you need a MYSQL Database on your hosting package.
**Your Hosting also needs to be on a LINUX server (Not a windows server.)
**If your hostimng meets the above requirements you are fine, otherwise for any free CMS you may need to switch or upgrade your web hosting package.

==Evaluating Your Site==
It is a good idea to evaluate your website every once in a while to see if it is functioning at its highest potential. There are some services out there that can help you with your evaluation.

WebXACT (formerly BOBBY) is a web-based service that checks sites for accessibility. It evaluates your site and lists recommendations to improve accessibility. You can ask it to use the World Wide Web Consortium Guidelines (available at W3.org) or [http://www.access-board.gov/sec508/e-learning.htm/Section 508 Guidelines].

W3 and Section 508 rules are for format. Consider guidelines for content, as well. We recommend [http://www.hon.ch/HONcode/Guidelines/guidelines.html] on the Net Foundation—Code of Conduct. This code has guidelines for authority, accountability, and attribution that form a solid basis not only for designing your site's approach to information but for evaluating other sites as well.

== Evaluating Resources ==
One of the main services advocacy organizations can offer through their print and electronic tools is providing quality and accurate information about a condition as well as helping people sort through health information found from various other sources.

Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the [http://www.trustortrash.org/developer ''Trust It or Trash It?''] tool.

Your members may have many places they find information other than your organization. Encourage them to use the [http://www.trustortrash.org ''Trust It or Trash It?''] tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more visit [http://www.youtube.com/geneticalliance#p/u/6/IKa7BlKpPZg Genetic Alliance's YouTube Channel].

==Factors to Consider==
*The complexity of the site design
*Resources available to the organization for site design
*The cost of professional site help
*The potential of the site for growth and change (especially complicated additions like message boards and shopping carts)
*Location! Prices for web design services tend to vary; they are generally higher near large cities.
*Some designers pay per page, and often prices vary based on the amount of coding that needs to be done.
*It is always worth writing to the CEO of the hosting company you like the look of. Often you may either get a good deal or an offer of free hosting.
*On the subject of domain names... A lot of nasty people may see your domain getting traffic and set up a copy cat advertising domain trading on the miss typing of the charity domain. They set up a single page advert site. It is worth investing in the main names for your site to avoid this situation and to protect your intellectual property.

 It's worth shopping around based on your organization's needs!

While on the topic of intellectual property rights, it is important to note that it is also possible for people to steal images that you post to your site. Thus, it is important to consider the possible measures that can be to taken to reduce or eliminate the likelihood this unfortunate circumstance could occur. Below are some thoughts on this, along with some mechanisms organizations utilized to keep their photos protected.

Jean Pickford

Foundation for Ichthyosis & Related Skin Types, Inc.

“ The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) represents patients with a very visible and disfiguring genetic skin disease. We have consented photos on our website that show the various forms of the disease, ranging from newborns to adults. There have been occasions when our photos have been copied from our website and posted on social media sites to gain attention/followers. In one case last year, a photo of a harlequin ichthyosis newborn was taken from our site and posted on Facebook, which went viral (i.e., one like = one prayer for this baby) with more than 2 million likes & more than 30,000 comments. Needless to say, some of the comments were nasty, like “this is a reptile baby” or “it’s an alien, put them out of their misery.”

Some of us here at FIRST feel very strongly that it is our duty to protect these photos from any exploitation on behalf of those we serve, and thus, they should be “watermarked.” However, others feel very strongly that a watermark detracts from the purpose of the photo in helping physicians, families, and others who are trying to learn about the disease.

In discussing it with some of our board members and web admins, we have added a “blocker” that pops up when you right click any photos on our site as well as a watermark on the images, so if they are taken without permission, they can’t be used. An example of this can be viewed at: [http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Harlequin-Ichthyosis/page_id/547 FIRST Harlequin Ichthyosis].”

Janet Long

US Hereditary Angioedema Center

“The website where we host our images is: [https://www.haeimages.com HaeImages]. With so many players in our “HAE space”, we found our web site images appearing in good places and bad. Therefore, we organized an image repository where patients could donate images and we could somewhat handle their use via the sale of them; the sales could in return support new research.

It has been as successful as I could have hoped, I think, in keeping our images safe.
However, there are still images taken from our web site (we did not watermark them, but instead trademarked the web site and this is usually enough to scare folks off from stealing….)”

“For the specific issue of a forum, some web development companies could be a good fit for advising on this. I'd strongly recommend finding a stable off the shelf solution rather than trying to roll your own unless you have mountains of money to throw at it. If you identify the product that you want to use, then sometimes the company that develops the product can recommend experienced implementation people.”

Christy Collins

M-CM Network

==Search Engine Optimization and Helping People Find Your Site==

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites.

===Generate A Keyword List===

The first thing to do is generate a list of keywords, or search terms, to target. This list may include all of the disease/syndrome names that your organization covers (including acronyms, abbreviations and variants), significant symptoms or signs, and anything else that a person might punch into a search engine when they are looking for the information that your site offers. You may want to survey some new members to see if they looked for you via search engine and if they remember what words they searched for. Once you have this list, sort it by relevance.

===HTML tags for SEO===

Important html tags for search engine optimization are fairly simple.
* The most important tag is <title>. The <title> tag doesn't actually appear on your web page, but rather in the top of your browser window. It will be used as the title of your search result listing on Google and the default title if your page is shared on Facebook.
* Next are heading tags: <pre><h1>, <h2>, <h3></pre> With h1 being the most important. Survey your site's content for places that you can sensibly fit your keywords into these tags.
* Set a meta description tag for the most important pages on your site and consider using your keywords here. Like the <title> tag, the description tag doesn't display on the site, but it has a lot of utility for other sites that parse your content. Besides search rank, Google uses it to display in it's search results. It is used on Facebook when your page is shared on a user's wall. This tag looks like: <pre><meta name="description" content="My page description." /></pre> Google will display the first 150 characters in the content attribute, you should try to keep the size of your description in that range.

===Incoming Links===

There is much nastiness on the internet due to the fact that incoming links boost search rank. Fortunately for many of us, our search terms are so obscure that we don't have a lot of competition for rank, and a little bit of effort with integrity should go a long way. The most important detail to know is that linking a keyword to your site will be much more powerful than linking a generic phrase like "click here" or "link".
Some simple suggestions:
- If you get media publicity, make sure that any internet version of the article correctly links to your site. If it doesn't, politely request that the link be added. A newspaper is not obligated to to do this, but it's worth asking.
- If you have affected families, fundraisers or board members who have their own blogs or websites, suggest ways that they could link to you if they are not already doing so. You may even want to offer badges that link to your site.

===Other Traffic===

* Facebook has potential for generating valuable traffic to your site, although most Facebook linking will not affect your Google search rank. Add Facebook "like" and "share" buttons to your site. Take a look at the default content that Facebook displays when a page on your site is shared to verify that it's accurate and helpful. This will consist of your <title> tag and meta description OR largest block of paragraph content if you don't have a meta description.
* Wikipedia links also do not contribute to search engine rank. However, when searching on medical terms and syndrome names, Wikipedia results often come up in the top three results. Make sure your organization is linked to from the links section of the wikipedia page/s for your disease. If your disease doesn't have a wikipedia page, make one.
* Be sure your disorder is listed on the appropriate databases, that the information is current and accurate and that your advocacy site is linked to. [[Information about Rare Genetic Diseases|Disease Databases]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Conferences, Workshops, and Meetings for Affected Individuals

2016-07-21T23:44:51Z

Akrokosky: /* Creative Welcome Sessions and Introductions */

Conferences, Workshops, and Meetings for Affected Individuals

2016-07-21T23:30:51Z

Akrokosky: /* Creative Welcome Sessions and Introductions */