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, 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.

Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that make life better for our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!

Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that make life better for our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!

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. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center.

* 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

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.