The VEDS Movement

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.

06/07/2026

Tomorrow 6/8
Last day to register kids and teens! marfan.org/conference

DON'T MISS OUT: CONFERENCE REGISTRATION FOR KIDS AND TEENS CLOSES TOMORROW!Register Now: marfan.org/conferencePeter Dona...
06/07/2026

DON'T MISS OUT: CONFERENCE REGISTRATION FOR KIDS AND TEENS CLOSES TOMORROW!
Register Now: marfan.org/conference

Peter Donato, who was diagnosed with Loeys-Dietz syndrome more than twenty years ago, is the Foundation's volunteer Teen Program Leader. Meet him -- and teens from around the globe -- at the "Teen Connect" session on Monday, June 15 at 7:00 pm (ET). And check out some of our other teen programming, including "Artistic Expression", "Teen Transitions," and "Ask the Experts."

.ConnectThrive

Don't wait! Kids and Teens registration ends this Monday, June 8th!Meet Gabriella Earnhart at the Conference!Registratio...
06/06/2026

Don't wait! Kids and Teens registration ends this Monday, June 8th!
Meet Gabriella Earnhart at the Conference!

Registration for kids and teens closes on MONDAY, JUNE 8. Register now: marfan.org/conference

Diagnosed with Marfan syndrome when she was five years old, the current Pepperdine University student (and a former Teen Ambassador for the Marfan Foundation) will be facilitating two sessions for teens at Conference. Connect with her to learn how to make the most of your teenage years when you are living with a connective tissue condition.

.Connect.Thrive

Is there a young person in your life who wants to know more about their own health and wellbeing alongside a connective ...
06/06/2026

Is there a young person in your life who wants to know more about their own health and wellbeing alongside a connective tissue condition? Don't miss their chance to talk to the experts.

Register now: marfan.org/conference

Dr. Iannucci and Dr. Liang will have an open conversation with our younger community members:
For kids ages 9-12
JUNE 17 / 7:00 PM ET

For teens ages 13-18
JUNE 17 / 6:00 PM ET

🎉 For 45 years, the Marfan Foundation has been driving progress for people living with Marfan syndrome and related condi...
06/04/2026

🎉 For 45 years, the Marfan Foundation has been driving progress for people living with Marfan syndrome and related conditions like Loeys-Dietz, VEDS, and Stickler.

In honor of our 45th anniversary, consider starting with a gift of $45 and be a part of what comes next! When your support our new Annual Fund, you fuel research, education, resources, and community programs that empower our community to thrive.

❤️Give today: marfan.org/annualfund

Just for the VEDS community, Dr. Melissa Russo is here for you with VEDS in Midlife and Beyond: Hormones, Menopause, & W...
06/03/2026

Just for the VEDS community, Dr. Melissa Russo is here for you with VEDS in Midlife and Beyond: Hormones, Menopause, & What We Don’t Know on June 16 at 4:00 PM ET.

Register now to choose the session: marfan.org/conference

Our Global Virtual Conference is less than two weeks away. Want to hear from Dr. Doyle all about eye issues? There's onl...
06/03/2026

Our Global Virtual Conference is less than two weeks away. Want to hear from Dr. Doyle all about eye issues? There's only one way: sign up today!

marfan.org/conference

When you are provided with the chance to choose your sessions, you can select Eye Issues and Key Management Considerations happening on June 16 at 4:00 PM ET.

🌴✨ A dream getaway with a purpose.Bid on an unforgettable 4-night stay at the legendary Round Hill Hotel & Villas in Jam...
06/02/2026

🌴✨ A dream getaway with a purpose.

Bid on an unforgettable 4-night stay at the legendary Round Hill Hotel & Villas in Jamaica, featuring a private 6-bedroom Estate Villa, dedicated staff, gourmet breakfasts, private beaches, and more.

Can’t attend Heartworks NYC one week from today on June 9? You can still submit a proxy bid through June 9 by emailing [email protected].

Every bid helps support the Marfan Foundation’s mission to help more people

Learn more: marfan.org/NYCgala

The Marfan Foundation family is a welcoming family. 💜💙❤️💚 🏳️‍🌈🏳️‍⚧️💚❤️💙💜
06/02/2026

The Marfan Foundation family is a welcoming family. 💜💙❤️💚 🏳️‍🌈🏳️‍⚧️💚❤️💙💜

Address

22 Manhasset Avenue
Port Washington, NY
11050

Telephone

+18008627326

Website

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