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.*

You are warmly invited to join our support group for individuals diagnosed with Stickler syndrome. This group offers a welcoming space to connect with others who understand your experiences and share valuable resources and information.

Join us every first Wednesday of the month at 8:00 PM Eastern Time to share stories, find support, and build community. We look forward to seeing you there and creating a supportive environment together!

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 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.

Raise a glass with us at UnCorked, our annual wine tasting fundraiser, on Monday, November 11th, from 6:00–9:00 PM at The Metropolitan Club.

Together, we’ll enjoy a memorable evening while supporting the life-saving mission of The Marfan Foundation—bringing hope and brighter futures to those affected by Marfan syndrome, Loeys-Dietz syndrome, VEDS, and related genetic aortic and vascular conditions. Cheers to connection, community, and a future full of hope!

Guests Can Expect:
🍷 A guided tasting of five exceptional wines, led by Master Sommelier Gambrelle Snyder
🥂 Light bites to complement the wines
🎉 Fun games and exciting prizes
🤝 Great company and an inspiring cause

Dress Code: The Metropolitan Club requires men to wear a jacket and tie, and women to wear a dress, skirt, or suit.

Event Committee:
Gil Bashe
Lee and Ellen Meiner
Jim Prutow
Callie Ritell
Danielle Ritell
Phil and Fallon Storace
Kenji and Emily Yoshikawa

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.

Empowered Relief® is a one-time class that equips individuals with essential pain relief skills in just 2.5 hours. Participants apply the skills and tools to create their personalized plan. Applied daily at home, the personalized plan helps participants master the skills. Multiple published studies show Empowered Relief® helps reduce pain and pain impacts on activity, mood, anxiety, and sleep up to 6 months after taking the class.

• Empowered Relief® should not replace a medical evaluation.

• Empowered Relief® is educational and informational and does not represent medical treatment.

• Empowered Relief® is interactive and includes participant Q&A. (Note: You can submit a question anonymously in the Zoom Q&A by selecting the ‘Send Anonymously’ option.)

• Empowered Relief® is an educational class, and attendance does NOT establish a therapist-client (or treating) relationship with the instructor.

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

Please Note: Due to our scheduling conflicts with our Conference in Atlanta, this group will meet on Thursday July 3, 2025 at 7pm EST. (instead of Thursday July 10, 2025)

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

You are invited to join us for a special evening at the 5th Annual Houston HeartWorks Gala on Friday, November 14 as we come together to support the life-saving mission of 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.

Guests will enjoy cocktails, dinner, live entertainment, and great company! We will also recognize deserving individuals who have made significant contributions to our community.