This page is for people who want to start or improve an EDS or HSD support group. It offers practical steps, realistic considerations, and trusted resources to help groups grow sustainably and inclusively.
What Is a Support Group?
A support group is a space where people can connect, share experiences, and exchange practical information. EDS and HSD support groups may include people with EDS or HSD, caregivers, family members, and occasionally guest speakers such as advocates or healthcare professionals.
Support groups are not a replacement for medical care. They offer shared understanding, emotional support, practical tips, and community connection.
This page is for people who want to start or improve an EDS or HSD support group. It offers practical steps, realistic considerations, and trusted resources to help groups grow sustainably and inclusively.
What Is a Support Group?
A support group is a space where people can connect, share experiences, and exchange practical information. EDS and HSD support groups may include people with EDS or HSD, caregivers, family members, and occasionally guest speakers such as advocates or healthcare professionals.
Support groups are not a replacement for medical care. They offer shared understanding, emotional support, practical tips, and community connection.
Why Start an EDS or HSD Support Group?
People start EDS and HSD support groups for many reasons. When considering starting a group, it can help to reflect on what you hope to offer and what you can realistically manage. Clear goals and realistic expectations support both the long-term sustainability of the group and your own well-being.
Consider:
- What motivates you to start a group? (peer connection and support, information and resource sharing)
- What area will the group cover? (local, national, global)
- Who is the group for? (people with a specific diagnosis, in specific age, or demographic groups)
- What format will work best? (in-person, virtual, or hybrid)
- How much time and energy can you commit?
- Will you lead alone or share responsibility with others?
First Steps to Starting a Support Group
Many groups begin with a few members, minimal structure, and a flexible approach that evolves as time goes on and the community grows. Focusing on a few practical decisions can help you get started without needing everything figured out in advance.
Key early steps:
- Decide on a format (in-person, virtual, or hybrid), location, and meeting frequency
- Write a short, clear group description
- Create basic group guidelines about respect, privacy, and safety
- Set a first meeting date and time
- Share your meeting information on your chosen communication channel
- List your group in the Support Group & Charity Directory to find members
These steps help move your idea into action and set clear expectations for participants.
Choosing a Support Group Format
Support groups may be in-person, virtual, or hybrid. Each format has benefits and challenges, and many groups adjust their format over time as needs and capacity change.
Virtual
Meet on online using video, audio,
or text-based platforms
Benefits
- Reduces barriers related to travel, mobility, and cost
- Can make regular attendance easier for people with fluctuating symptoms
- May serve local, national, or global communities
Challenges
- May require additional moderation and community guidelines
- Technology access and comfort may vary
- May feel less personal for some participants
In-person
Meet in physical locations such as libraries, community centers, or hospitals
Benefits
- Supports face-to-face connection and local resource sharing
- May feel more personal for some participants
Challenges
- Attendance may be impacted by accessibility, transportation, and symptoms
- Venues require advance planning and may come at a cost
- Reach is limited to the local area
Hybrid
Combines in-person meetings
with virtual attendance options
Benefits
- Broadens access and offers flexibility for participants with different needs
Challenges
- Requires additional planning, technology, and facilitation to ensure both in-person and virtual participants are included
Virtual
Meet on online using video, audio, or text-based platforms
Benefits
- Reduces barriers related to travel, mobility, and cost
- Can make regular attendance easier for people with fluctuating symptoms
- May serve local, national, or global communities
Challenges
- May require additional moderation and community guidelines
- Technology access and comfort may vary
- May feel less personal for some participants
In-person
Meet in physical locations such as libraries, community centers, or hospitals
Benefits
- Supports face-to-face connection and local resource sharing
- May feel more personal for some participants
Challenges
- Attendance may be impacted by accessibility, transportation, and symptoms
- Venues require advance planning and may come at a cost
- Reach is limited to the local area
Hybrid
Combines in-person meetings with virtual attendance options
Benefits
- Broadens access and offers flexibility for participants with different needs
Challenges
- Requires additional planning, technology, and facilitation to ensure both in-person and virtual participants are included
Finding and Connecting With Members
Some support groups stay intentionally small, while others grow gradually as awareness spreads. Common ways people find support groups include:
- Word of mouth
- The Ehlers-Danlos Society’s Support Group & Charity Directory
- Inspire message boards
- Social media and online communities
- Event platforms like Meetup.com
- Healthcare professionals sharing group information or flyers left in clinics or hospitals
Running Supportive and Safe Meetings
Clear structure and shared expectations help support group meetings feel safe and welcoming. This is especially important when people share personal experiences or health information.
Helpful approaches include:
- Starting and ending meetings on time
- Explaining the meeting format and group guidelines at each meeting
- Allowing people to listen without feeling pressured to speak
- Redirecting medical advice or crisis discussions to professional support
Asking for feedback, setting realistic goals, and reviewing them regularly all support long‑term sustainability. A sustainable group adapts over time and respects both the leader’s capacity and members’ needs. Co‑leaders can reduce burnout, provide backup during periods of worsened symptoms, and keep the group running smoothly. You may also adjust meeting frequency, change formats, or pause activities when needed.
Relationship to The Ehlers-Danlos Society
The Ehlers-Danlos Society offers a Support Group & Charity Directory to help people with EDS and HSD find groups from around the world who support people with EDS and HSD. Groups listed in the Support Group & Charity Directory operate independently and are not managed, funded, or governed by The Ehlers-Danlos Society.
Some groups choose to join the EDS & HSD Global Alliance, which offers opportunities to collaborate and connect with The Ehlers-Danlos Society and other organizations doing similar work.
If you are considering starting a charity or nonprofit organization, additional legal and financial responsibilities apply. You must follow the laws and tax regulations in your country, state, or locality. Seeking local financial and legal guidance before pursuing nonprofit status is strongly recommended.
Resources for Support Group Leaders
Free
Support Group Leader Training — CurePSP
CurePSP offers a free Support Group Leader Training Manual and webinars to develop skills needed to lead group sessions and handle challenges.
Free
Facilitator Training — Peer Support Circles
Peer Support Circles offers free virtual training focused on core support group facilitation fundamentals, including participation strategies and group process fundamentals.
Support Group Facilitation Training — LCFT
The London College of Foreign Trade offers a paid certificate course covering group dynamics, communication, conflict resolution, and trauma-informed care, designed for new facilitators.
How to Lead a Support Group Training — The Loss Foundation
The Loss Foundation offers paid courses on how to lead support groups, including skills for opening, adapting online/in-person, and managing dynamics.
