Starting and Running an EDS and HSD Support Group

In-person support groups can be a great gift for your community. They can provide a way for others with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) to meet others like themselves. Support groups can provide those with EDS and HSD information about local doctors and ways to best manage their condition by having a variety of speakers or sharing the experiences of members. Support groups can increase EDS and HSD awareness in their community through holding awareness events. They can also raise funds to further research and projects that help those with EDS and HSD. In-person support groups, when run well, can make a tremendous difference in the lives of all involved.

Why have a support group?

The primary purpose of an in-person support group is to provide emotional and informational support for its members. A support group does not need to be about complaining, feeling powerless, or depressed. A good support group helps members interact with others who have EDS and HSD to describe challenges and develop solutions so that they can live better with Ehlers-Danlos syndromes or hypermobility spectrum disorders.

Every support group is independent. The Ehlers-Danlos Society does not run in-person support groups so groups are separate from it. They are also unique in their goals, structure, and group dynamics. Each support group reflects its leader(s)’ and members’ skills and interests. A support group is more like a family than a business. Your support group can be what you want it to be.

What are support groups like?

Each support group should have a leader. Because many support group leaders have EDS or HSD themselves, it is best to have one or more co-leaders. Having co-leaders lessens the workload for each, makes leading much more fun, and helps the group survive when one leader has a health crisis.

Some in-person support groups have committees that complete tasks for the group. Examples of committees are Awareness, Fundraising, Kid and Teen Groups, Welcoming New Members, Newsletter, Social Get-togethers, managing its Google group, email list, or Facebook group, or maintain the group’s doctors list.

Some groups have officers in addition to its leader(s). There are in-person support groups that also have secretaries, treasurers, and others.

In-person support groups, being independent and not chapters of our organization, cannot use The Ehlers-Danlos Society’s logo. Support groups also cannot use The Ehlers-Danlos Society’s EIN tax ID for events or the group. If you want to start a charity or non-profit organization instead of an in-person support group, you need to learn about the laws, rules, and tax regulations in your country, state, and locality. A charity or non-profit organization is also independent of The Ehlers-Danlos Society.

There are support groups that have three members, 10 members, or 50 members attend meetings. Most EDS and HSD support groups start small and grow through the years. So if your group only has a few people attend your first meeting, know that, with time, your group will grow larger. Quite a few support groups that have been running at least three years have member lists with more than 200 group members. How large the support group is impacts what it can do.

What should support groups do?

What a support group should do depends upon your goals. Some groups want to simply have discussion amongst group members, to talk about their lives and symptoms while using group members to problem-solve solutions. Other groups schedule speakers to help members learn more about their condition and what to do about it. Some groups plan awareness events so members can share information about Ehlers-Danlos syndromes and hypermobility spectrum disorders with medical professionals or community members. Some groups see movies, plan dinners, host game nights, have parties and other activities so that group members can have fun and make friends with others who “get it”. Some support groups fundraise to help the support group or EDS and HSD community. Some support groups provide mentors for the newly diagnosed. Support groups should maintain a doctors list, including recommendations from support group members. Some groups plan opportunities specifically for kids or teens. And some EDS and HSD support groups do two, three, or more of these things. What your support group does will depend upon your goals.

How do you let people know about your support group?

To get support group members, you need to advertise your group. There are many places to do so, but you will want to think about where those with EDS and HSD may look for a support group.

List your support group on:

  • The Ehlers-Danlos Society’s website (Complete the Listing Request Form and we will post your group promptly: https://ehlers-danlos.com/support-groups/)
  • EDS and HSD Facebook groups
  • Meetup.com
  • Local newspapers and health magazines
  • Inform local doctors and therapists about your support group so that they can refer patients

Some support groups have begun when two or more members of an online EDS and HSD forum decide to start an in-person support group in their area. There are in-person support groups which have begun with members from The Ehlers-Danlos Society’s message board (https://www.inspire.com/groups/ehlers-danlos-syndromes-and-related-disorders/), Facebook groups (either general EDS and HSD Facebook groups or geographically-specific EDS and HSD Facebook groups), RareConnect (A Eurordis Initiative: https://www.rareconnect.org/en/community/ehlers-danlos-syndrome), and elsewhere. EDS and HSD in-person support groups may begin however or wherever two or more people communicate and decide to meet in person with the goal of meeting others in their community as well.

When and where should meetings be held?

Starting a support group can be as simple as picking a date, time, and location to have your first meeting.

Some considerations for setting when to have the meeting are: when leaders are available, when speakers are available (if there will be one), and when most with people with EDS and HSD in your community can attend.

Support groups may meet monthly, bi-monthly, or quarterly. Consider alternating structured meetings with social get-togethers, awareness events, fundraisers, or other opportunities.

The location you chose for meetings need to be centrally located for attendees, wheelchair and disability accessible, and quiet enough to be able to hear each other well. Good locations to have support group meetings are free of strong smells, pet dander, and other possible triggers for those some who will attend your meetings.

Some support groups meet in private homes which have the benefit of privacy, comfort, and quiet environment. Drawbacks to having meetings in a private home are that they often are not wheelchair accessible and there may be pets to which some attendees are allergic.

Some EDS and HSD support groups meet in restaurants or coffee houses. These locations are often wheelchair accessible and attendees can get something to eat or drink while meeting. However, eateries are often noisier, there is little privacy for discussions, and there may be strong smells which can trigger symptoms for some.

Some support groups meet in meeting rooms in libraries, schools, churches, hospitals, or businesses. These have the benefit of being wheelchair accessible and quiet enough to hear discussions and speakers while also providing privacy. Many meeting rooms however must be reserved well in advance and may have rules about how many can attend or bringing food and beverage in.

Some support groups have a set location for meetings and then have social get-togethers in a different location. The benefit of this arrangement is so that group members can attend what is most important to them and provides a variety of locations to make it easier on members who live in many different areas can attend those events that are closer to them.

There is not a right or wrong location for your meetings. The best place to hold your meetings will depend upon how large your group is, what your meeting goals are, and what the environmental needs are for your members.

You can let people know when you are having meetings and other events by writing a post on The Ehlers-Danlos Society’s message board on Inspire (https://www.inspire.com/groups/ehlers-danlos-syndromes-and-related-disorders/) and Facebook page (https://www.facebook.com/ehlers.danlos/),  EDS and HSD Facebook groups, www.meetup.com,  and other local resources. You can also let your group members know when there is a meeting or other event using an email list, Google group, or Facebook group. These are created for support group members to get announcements and communicate with each other about local resources or arrange carpools to events. Be aware that there are some people who do not use Facebook or other social media so having an email option can be helpful for these members.

What might a meeting look like?

A support group meeting may start with an introduction of the leader(s) and attendees. The leaders may share announcements. A discussion topic may be provided. Or the group may have “Show & Tell” where members show one thing that helps them live better with EDS and HSD, during which members may show a new book or app to track symptoms, or a way that helps them manage pain, a kitchen gadget that makes food preparation easier, a brace or cushion that really help, or anything else that helps live better with EDS and HSD.

Speakers may present at support group meetings. You may want to book doctors who specialize in treating common symptoms in EDS and HSD, a mental health professional to talk about coping with conditions like EDS and HSD, an attorney to talk about applying for disability benefits, or a compounding pharmacist to talk about how they can help patients. In other words, speakers can present about any topic that helps those with EDS and HSD live better or know more about their conditions.

Leave time in meetings for mingling. This allows attendees to share experiences, form friendships, and exchange contact information. This also lets attendees ask specific questions to other members and share personal successes and challenges.

Some in-person support groups provide ways to include those who are unable to attend meetings in person. Videotaping part of meetings and sharing the video on websites, YouTube, Facebook groups, or elsewhere is one way to share what was learned at meetings. There are also live-streaming options, like Facebook Live for example, which allow people to view the meeting from their homes. If providing this option, be aware that some who attend will be wary of asking questions or sharing their experiences when they know others outside of the group will be able to see them. Likewise, some speakers are unwilling to speak openly when they know it is being videoed. So if you want to provide this option for those unable to attend, make sure you have the permission from your speaker and attendees to video and provide a time in the meeting when there is no videoing so that attendees can feel comfortable talking openly.

Each support group will look different, will vary in size, and could have different goals. But each support group can make a difference in the lives of those with EDS and HSD in your area as well as increase EDS and HSD awareness in your community.

A support group is a great gift for your Ehlers-Danlos syndromes and hypermobility spectrum community. Leading a support group can be a rewarding experience, especially when done with others. We encourage you to start or join an EDS and HSD support group near you.

If you have additional questions about starting or running an in-person support group, feel free to contact us.