Conferences, Workshops, and Meetings for Affected Individuals

From WikiAdvocacy

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

  1. 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.
  2. Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
  3. 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.
  4. 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."


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

  1. Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
  2. You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
  3. Plan on gratuities of about 25% for meals.
  4. You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
  5. 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

  1. Exhibitor fees average $1,000.00 per booth.
  2. Give potential exhibitors about 6 months of lead time.
  3. 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.
  4. 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.
  5. 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:

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

  1. Start planning your conference 12 to 14 months before the date.
  2. Book the site 12 to 14 months in advance.
  3. Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
  4. From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
  5. Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
  6. 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.
  7. As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
  8. Finalize the conference agenda as the registrations are coming in.
  9. 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

  1. The number of people interested is the biggest factor in establishing the scope and location of your meeting.
  2. Hotel rates should be around $100.00 a night.
  3. 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. 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 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!

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