Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30?  Would you like to connect with others in your age group? If so, this support group is for you.

This group meets on the first Wednesday of every month at 7 pm EST.

This group is for adults aged 18-50 with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. This group meets on the 1st Thursday of every month at 5:00 PM Eastern.

This support group is for people with Marfan syndrome or related conditions who are interested in exploring various ways to deal with pain. It usually meets on the fourth Thursday of every month at 7:00 PM EST; however, due to the holiday, we will meet on Thursday, January 2 (same time, 7 pm EST).

This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences. Due to the holiday, the December 24 session of this support group has been rescheduled for Tuesday, January 7 (same time, 6 pm).

1^st Tuesday of each month at 8 pm Eastern Time

If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges we all face day-to-day. If you have not yet been diagnosed with VEDS, please check out the Seeking Diagnosis group here. 

*Please note, every member wanting to join this VEDS Connect group should have a genetically confirmed diagnosis of VEDS to attend. We will request that you confirm that you have a VEDS diagnosis before admitting you to this group. We rely on your honesty to keep this a safe space for group attendees. If you do not have a genetically confirmed diagnosis of VEDS, please sign up for the Seeking Diagnosis and Newly Diagnosed group instead.*

If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. Jan Lynch, RN, of The Marfan Foundation’s Help & Resource Center, will host this group.

* If your child is under 18, please register for the VEDS Parents Support Group *

This group meets the second Wednesday of every other month from 7-8:30pm

Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30?  Would you like to connect with others in your age group? If so, this support group is for you.

This group meets on the first Wednesday of every month at 7 pm EST. (Single reschedule for January to start at 8 pm).

If you have been diagnosed with LDS, this group is specifically for you! This is an opportunity to meet others with LDS and talk about the challenges we all face day-to-day. If you have not yet been diagnosed with LDS, please check out the Seeking Diagnosis group here

Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.

This group discussion is dedicated to the challenges our community faces when we lose our beloved friends, community members, and family members to VEDS, Marfan, or Loeys-Dietz syndrome. It is a safe place for us to discuss our emotions, honor the memory and joy of our loved ones, and move forward together. This group is also open to anyone coping with loss in the community.

This group meets on the 2nd Tuesday of every month at 6:00 PM Eastern.

Are you a parent or guardian of a child with early onset (previously called neonatal or infantile) Marfan syndrome? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with these conditions. This diagnosis is generally reached by the child having severe symptoms of Marfan syndrome at birth or shortly thereafter.
This group meets on the second Tuesday of every month at 8 pm EST.