For the Symposium Program: Click here

If the registration fee is an issue, please contact Eileen at enovins@marfan.org.

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.*

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.

You are invited to join us for a special evening at 

Evening With Heart Scottsdale – Pickleball Edition

On Thursday, November 7,  we will come together to support the life-saving mission of the The Marfan Foundation and build a brighter future for our loved ones affected by Marfan syndrome, Loeys-Dietz syndrome, VEDS, and related genetic aortic and vascular conditions.

This exciting event will feature something for everyone!

• Pickleball Tournament
• Pickleball Clinic
• Spectator and Cheering Section
• Drinks
• Light Bites
• Awards
• Raffle Prizes and MORE! 

Tournament Prizes will be presented to the 

• 1st and 2nd Place teams!
• 1st Place will receive a prize valued at $400
• 2nd Place will receive a prize valued at $250

*Please note, if you are affected with Marfan syndrome, Loeys Dietz syndrome, VEDS, or a related genetic aortic and vascular condition, we will require a doctor’s note for you to play in the pickleball tournament or clinic*

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.

To download the program: Click 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.

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

Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you. This group meets on the 3rd Friday of every month at 3:00 PM Eastern.