The VEDS Movement

A community dedicated to raising awareness about Vascular Ehlers-Danlos Syndrome.

The Marfan Foundation (and its divisions including the VEDS Movement) drives research, education, and support while building community to save lives, improve outcomes, and empower all people living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndromes, and related conditions to thrive.

Community Guidelines and Disclaimer

The Marfan Foundation and its divisions are commit

ted to maintaining a safe, respectful, and inclusive environment across all our digital platforms. To that end:

• Zero Tolerance Policy: We do not tolerate hate speech, harassment, personal attacks, discriminatory language, or disrespectful dialogue. Any content that violates these standards may be removed, and offending users may be blocked or reported.

• Shared Content Disclaimer: From time to time, we may share content created by our community members, including stories, testimonials, and social media posts. The views and opinions expressed in such content are those of the individuals and do not necessarily reflect the views, policies, or positions of The Marfan Foundation. By engaging with our digital platforms, you agree to abide by these guidelines and contribute positively to our community.

05/31/2026

GET CONNECTED!

The latest issue of the Marfan Foundation’s official magazine is out. Read it here: marfan.org/connective-issues

It's packed with expert insights, groundbreaking research, compelling stories, Foundation updates, and more. Celebrate our 45th Anniversary, explore our new exercise and physical activity resource, and learn about dissections beyond the aorta.

05/31/2026

Do you live with chronic pain? Therapist Doré Schubert - who lives with Marfan syndrome - has some tips for coping and thriving.

https://marfan.org/blog/3-ways-therapy-can-help-you-cope-with-chronic-pain/

Thanks so much, Doré Serein Therapy

Doré Schubert knows well the emotional toll of living with chronic pain. Diagnosed with Marfan syndrome at age two, she did not begin experiencing chronic pain until nearly 30. When it arrived, so did waves of grief, anger, and anxiety about the future. But over time, Doré developed tools to cope ...

05/30/2026

Talk About Someone Who "Just Gets It"!

We’re excited to introduce a new voice in our community: Doré Schubert, a Canadian therapist living with Marfan syndrome who brings both professional insight and lived experience to conversations around mental health, chronic illness, resilience, and coping. Read her story here and keep your eyes open for more advice and insights from Dore on the Foundation pages.

Serein Therapy

Doré Schubert was diagnosed with Marfan syndrome at age two after experiencing a dislocated lens. By age 16, she underwent her first spinal fusion surgery for scoliosis. “Still, I lived a pretty normal life and didn’t think too much about it. I did pretty much everything that everybod...

05/30/2026

Happening now UVA Health 2026 UVA Multidisciplinary Aortic Symposium, sponsored in part by The Marfan Foundation We are so grateful for the way in which UVA is focusing on genetic aortic conditions.

05/30/2026

If you want to hear more from Dr. Black, register for Conference now so you don't miss Beyond the Aorta: Understanding Your Vascular System on June 18 at 3:00 PM ET

🗓️ marfan.org/conference

05/28/2026

Caregivers need support, too.

“You are probably carrying more than people can see,” says Doré Schubert, a therapist living with Marfan syndrome. “You matter in this too.”

Tune in to Doré’s words of encouragement for parents, partners, family members, and others caring for a loved one with Marfan, Loeys-Dietz, VEDS, Stickler, or a related condition.

Watch her message, and visit marfan.org/mental-health for more resources.

Serein Therapy

05/27/2026

✔️ Sign up now: marfan.org/conference

Imagine connecting with someone living with a genetic aortic condition on the other side of the world. Despite the distance, they understand your journey in ways few others can—and that connection grows into a treasured friendship, a trusted source of support, and a valuable new perspective.

No matter where you are, you can learn, connect, and thrive through the Marfan Foundation’s Upcoming Global Virtual Conference.

Over four days, explore key aspects of living with Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions through sessions on medical care, mental health, emerging research, and more. With programming for adults, teens, and children, plus opportunities to build lasting connections, this event brings our global community together.

05/26/2026

💚 Northern California: May 30th marfan.org/walknorcal

💜 Philadelphia: May 30th marfan.org/walkphiladelphia

💙 Pacific Northwest: June 6th marfan.org/walkpnw

❤️ Milwaukee: June 7th marfan.org/walkmilwaukee

💚 Boston: June 14th marfan.org/walkboston

💜Chicago: June 20th marfan.org/walkchicago

💙Central Virginia: June 27th marfan.org/walkvirginia

❤️Michigan: June 27th marfan.org/walkmichigan

💚New Jersey: June 28th marfan.org/walknewjersey

05/25/2026

Today in the U.S., we pause to honor and remember the brave individuals who made the ultimate sacrifice, and the loved ones—past and present—who carry the weight of that loss.

05/24/2026

Trying to balance your mental health with your physical health while living with a genetic aortic condition isn’t easy.

Watch this webinar from our 2024 Global Virtual Conference to learn some strategies around: focus on lifestyle factors, self talk, actions, mindset, emotions, medical team, social circle and support system, habits, thoughts and reactions to them.

https://ow.ly/wXP550Z3CTf

Address

22 Manhasset Avenue
Port Washington, NY
11050

Telephone

+18008627326

Website

http://thevedsmovement.org/

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