Looking to connect with other people who are affected by EDS and HSD? We invite you to join our Let’s Chat: Virtual Support Groups! Our monthly and quarterly groups offer a chance to share your story and connect with others from around the world who understand. The groups are open forums to discuss topics or questions you have with other community members. Whether you are new to EDS and HSD or have been diagnosed for years, these meetings are a great place to get support and learn to better live with EDS and HSD.
Virtual support groups are held on Zoom and are facilitated by Ehlers-Danlos Society staff. All virtual support groups are one hour long. Before registering for our virtual support groups, please review the Let’s Chat: Virtual Support Group Code of Conduct. By registering for and joining a group, you agree to follow the Code of Conduct.
Our virtual support groups are intended for support and networking. Medical advice will not be given during a group. Information and resources shared during these groups are not endorsed by The Society. To protect the privacy of participants, virtual support groups and their chats are not recorded, saved, or shared.
Registering for Virtual Support Groups
Our virtual support groups require registration to attend. Please choose the group you would like to attend from the list below and complete the linked form. Once your registration is received, you will receive a confirmation email with information about how to join the group.
You only need to register for a series of groups once. After you are registered, you will receive a reminder email each time the group meets. If you would like to attend multiple different groups, such as both our Sunday Let’s Chat: EDS and HSD and our Monday Let’s Chat: EDS and HSD groups, you must register for each group separately.
Upcoming Groups
| Mon | Tue | Wed | Thu | Fri | Sat | Sun |
|---|
Let’s Chat: EDS and HSD
Our Let’s Chat: EDS and HSD groups are open to adults who are affected by any type of EDS or HSD. These groups are a great place to share your experiences with others who understand what it is like to be affected by EDS and HSD.
You can register for one, two, three or all four of our monthly Let’s Chat: EDS and HSD groups. Please note, you must complete a separate registration form for each different group.
By registering for and joining a group, you agree to follow the Code of Conduct. Participants must be 18 years or older. Medical advice will not be given during the group. Information and resources shared during these groups are not endorsed by The Society.
First Sunday of every month, 1:00 pm ET/6:00 pm BST/GMT – Register for the series HERE
- 2025 dates: January 5, February 2, March 2, April 6, May 4, June 1, July 6, August 3, September 7, October 5, November 2, December 7
Second Monday of every month, 7:00 pm ET/12:00 am BST/GMT/9:00 am AST – Register for the series HERE
- 2025 dates: January 13, February 10, March 10, April 14, May 12, June 9, July 14, August 11, September 8, October 13, November 10, December 8
Third Tuesday of every month, 12:00 pm ET/5:00 pm BST/GMT – Register for the series HERE
- 2025 dates: January 21, February 18, March 18, April 15, May 20, June 17, July 15, August 19, September 16, October 21, November 18, December 16
Fourth Wednesday of every month, 9:00 am GMT/ 8:00 pm AEDT– Register for the series HERE
- 2025 dates: March 26, April 23, May 28, June 25, July 23, August 27, September 24, October 22, November 19, December 17
Let's Chat: Parents
Our Let’s Chat: Parents group is for parents with EDS or HSD or parents of children with EDS or HSD. This group takes place once monthly and is a great place to share your experiences with others who understand what it is like to be affected by EDS and HSD as a parent.
Please do not join our Let’s Chat: Parents group if you are not part of the intended demographic for the group.
By registering for and joining a group, you agree to follow the Code of Conduct Policy. Participants must be 18 years or older. Medical advice will not be given during the group. Information and resources shared during these groups are not endorsed by The Society
First Wednesday of every month, 12:00 pm ET/5:00 pm BST/GMT – Register for the series HERE
- 2025 dates: January 2, February 5, March 5, April 2, May 7, June 4, July 2, August 6, September 3, October 1, November 5, December 3
Let’s Chat: Teens (Age 13-18)
Our Let’s Chat: Teens group is for teens, ages 13–18, who have been diagnosed with, or suspect that they have, EDS or HSD. This group takes place once monthly and is a safe space for teens to share their experiences with and make friends with people who are the same age and know what it is like to be affected by EDS and HSD.
The form to register for our Let’s Chat: Teens group must be completed by a parent or guardian. Parents/guardians may not actively participate in our Let’s Chat: Teens group but are encouraged to supervise their teen’s participation. Parents/guardians are not permitted to join the group without their teen.
By registering for and joining a group, you and your teen agree to follow the Code of Conduct Policy. Our commitment to keeping the children and teens we serve safe is always our number one priority. We actively monitor participant activity, and we reserve the right to remove anyone who does not follow the policy.
Medical advice will not be given during the group. Information and resources shared during these groups are not endorsed by The Society.
Third Sunday of every month, 1:00 pm ET/6:00 pm BST/GMT – Register for the series HERE
- 2025 dates: January 19, February 16, March 16, April 27, May 18, June 15, July 20, August 17, September 21, October 19, November 16, December 21
Lets Chat: vEDS
Our Let’s Chat: vEDS group is for adults who have vascular Ehlers-Danlos syndrome (vEDS) and/or those who have a child with vEDS. This group takes place once monthly and is a great place to share your experiences with others who understand what it is like to be affected by vEDS.
To register for our Let’s Chat: vEDS group, you are required to submit proof of diagnosis via genetic testing results or documentation of a clinical diagnosis of vEDS from a geneticist. Please upload this information using the form linked below. We will not share this information with any outside parties or use it for any other purpose.
By registering for and joining a group, you agree to follow the Code of Conduct Policy. Participants must be 18 years or older. Medical advice will not be given during the group. Information and resources shared during these groups are not endorsed by The Society
Third Wednesday of every month, 2:00 pm ET/7:00 pm BST/GMT – Register for the series HERE
- 2025 dates: January 15, February 19, March 19, April 16, May 21, June 18, July 16, August 20, September 17, October 15, November 19, December 17
Let's Chat: Men
Our Let’s Chat: Men group is for men who have been diagnosed with, or suspect they may have, EDS or HSD. This group takes place monthly and is a great place to share your experiences with others who understand what it is like to be a man who is affected by EDS and HSD.
Please do not join our Let’s Chat: Men group if you are not part of the intended demographic for the group.
By registering for and joining a group, you agree to follow the Code of Conduct Policy. Participants must be 18 years or older. Medical advice will not be given during the group. Information and resources shared during these groups are not endorsed by The Society
Second Thursday, every month,1:00 pm ET/6:00 pm BST/GMT – Register for the series HERE
- 2025 dates: February 13, March 13, April 17, May 8, June 12, July 10, August 14, September 11, October 9, November 13, December 11
Let’s Chat: Partners and Spouses
Our Let’s Chat: Partners and Spouses group is for partners and spouses of individuals who have been diagnosed with, or suspect they may have, EDS or HSD. This group takes place quarterly and is a great place to learn how to support your partner or spouse with EDS or HSD.
Please do not join our Let’s Chat: Partners and Spouses group if you are not part of the intended demographic for the group.
By registering for and joining a group, you agree to follow the Code of Conduct Policy. Participants must be 18 years or older. Medical advice will not be given during the group. Information and resources shared during these groups are not endorsed by The Society
Second Wednesday, every three months, 1:00 pm ET/6:00 pm BST/GMT – Register for the series HERE
- 2025 dates: February 12, May 14, August 13, November 12
Let’s Chat: LGBTQIA+
Our Let’s Chat: LGBTQIA+ group is for LGBTQIA+ community members who have been diagnosed with, or suspect they may have, EDS or HSD. This group takes place quarterly and is a great place to share your experiences with others who understand what it is like to be affected by EDS and HSD as part of the LGBTQIA+ community.
Please do not join our Let’s Chat: LGBTQIA+ group if you are not part of the intended demographic for the group.
By registering for and joining a group, you agree to follow the Code of Conduct Policy. Participants must be 18 years or older. Medical advice will not be given during the group. Information and resources shared during these groups are not endorsed by The Society
Second Wednesday, every three months, 12:00 pm ET/5:00 pm BST/GMT – Register for the series HERE
- 2025 dates: March 12, June 11, September 10, December 10
Let's Chat: Communities of Color
Our Let’s Chat: Communities of Color group is for adults who identify as Black, Indigenous, Hispanic/Latine, Asian, Middle Eastern, Pacific Islander, multiracial, or as part of any other community of color. This group is for individuals who have been diagnosed with, or suspect that they have, EDS or HSD. This group takes place quarterly and is a great place to share your experiences with others who understand these intersectional identities
Please do not join our Let’s Chat: Communities of Color group if you are not part of the intended demographic for the group.
By registering for and joining a group, you agree to follow the Code of Conduct Policy. Participants must be 18 years or older. Medical advice will not be given during the group. Information and resources shared during these groups are not endorsed by The Society
- Second Tuesday, every three months 1:00 pm ET/6:00 pm BST/GMT – Register for the series HERE
- 2025 dates: Feb 11, May 13, August 12, November 11
Let’s Chat: 50+
Our Let’s Chat: 50+ group is for adults aged 50 and older who have been diagnosed with, or suspect that they have, EDS or HSD. This group takes place quarterly and is a great place to share your experiences with others who understand what it is like to be affected by EDS and HSD in this stage of life.
Please do not join our Let’s Chat: 50+ group if you are not part of the intended demographic for the group.
By registering for and joining a group, you agree to follow the Code of Conduct Policy. Participants must be 18 years or older. Medical advice will not be given during the group. Information and resources shared during these groups are not endorsed by The Society
Second Wednesday, every three months 1:00 pm ET/6:00 pm BST/GMT – Register for the series HERE
2025 dates: April 9, July 9, October 8
Can I participate if I have not been diagnosed with EDS or HSD?
Yes. Individuals at any stage of diagnosis are invited to join our Virtual Support Groups, except for the Let’s Chat: vEDS group. To join our Let’s Chat: vEDS group, you must submit proof of diagnosis.
Do I have to speak? Do I have to have my camera on?
Attendees can participate to the extent they feel comfortable with and are welcome to join just to listen. You can ask questions out loud, in the chat, or you can message the host to ask a question anonymously. Attendees can keep their cameras on or off.
What should I do if I do not have the Zoom link to join?
If you did not receive a Zoom link, or cannot locate the email with the link, please reach out to [email protected].
What should I do if I am not receiving reminder emails?
If you are not receiving reminder emails for a group that you registered for, please reach out to [email protected]. Please make sure you have checked your email’s spam and junk folders.
Are Let’s Chat: Virtual Support Groups recorded? Is the chat saved?
To protect the privacy of participants, Let’s Chat: Virtual Support Groups and their chats are not recorded, saved, or shared.
- To ask a question or raise a topic for discussion, please use the raise hand feature under “reactions” at the bottom of the screen.
- To respond to someone else’s question or topic, unmute your microphone.
- Raise your hand at the beginning of the group to ensure you have a chance to ask your question.
- You can ask your questions in the chat if there isn’t time for everyone to ask their questions verbally.
- Sometimes there is not enough time for all participants to ask their questions. If you still have questions after the group, you can reach out to [email protected] or post them on https://www.inspire.com/groups/eds-and-hsd/.
- When responding to your peers, please do not interrupt or change the topic. If you have a new topic to raise, please raise your hand.
- You can use “chat” to privately message the host/moderator if you would like them to ask a question anonymously on your behalf. When the host receives your question, it will be added to the queue.
- You can keep your camera on or off, whichever you are most comfortable with.
- Please keep your microphone muted when you are not speaking to reduce background noise.
- To protect the privacy of participants, Zoom chats are not saved. Be sure to copy any links or information you want to save before the meeting is over.
