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 in reaching out to local colleges or universities. Students may be able to 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:

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.

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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