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.*

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.

Join us for a fun and meaningful night at Evening with Heart St. Louis, a cocktail party benefiting The Marfan Foundation on Saturday, April 5, 2025, at 6:30 PM.

Hosted by Dr. and Mrs. Alan and Rebecca Braverman, this special evening brings together friends, supporters, and advocates to raise funds and awareness for those living with Marfan syndrome and related genetic aortic and vascular conditions.

Enjoy delicious cocktails, gourmet bites, live music, and inspiring stories, all while making a real impact. Your support helps The Marfan Foundation continue its work in research, education, and support for individuals and families affected by these conditions.

Let’s come together for a night of heart, hope, and generosity—we can’t wait to see you there!

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.

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.

Please note that the date of the November Kid’s Club support group has been changed from November 19 to November 26. The time will remain the same: 7:00 p.m. ET.

Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.

The Kids Club will include fun, age-appropriate games and activities for your child (such as Bingo, Would You Rather, Scavenger Hunt, 5 Second Rule, etc) and will be held on Zoom.

This is a recurring group that meets monthly on the third Tuesday of every month. (Register once and attend any dates)