Kids Club

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.

15 Sep

7:00 pm - 9:00 pm

Virtual

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Support for Parents/Guardians of Children w/Marfan, LDS, related conditions

Are you are a parent or guardian of a child with Marfan syndrome, Loeys-Dietz syndrome or a related connective tissue condition? 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 one of these conditions. This group meets on […]

16 Sep

7:00 pm - 8:00 pm

Zoom

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Conexiones: Estamos juntos (impartido en español)

Are you diagnosed with Marfan syndrome or a related disorder? Are you between 30 and 50 years old? Would you like to connect with others living with Marfan syndrome and related disorders for support and to share resources and information? If so, this group is for you.

16 Sep

7:30 pm

Virtual

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Marfan Connect (50+) Support

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.

18 Sep

3:00 pm

Virtual

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Walk For Victory – Cleveland

Join the Walk for Victory movement!  Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions.  Together, we raise awareness and help families get the best medical care from leading experts.  Together, we help fund events and programs that improve the lives of our community: […]

19 Sep

1:00 pm - 4:00 pm

Cleveland Clinic - Crile Mall

E 100th St, Cleveland, OH 44106 (Greenspace between Euclid Ave. & Carnegie Ave.)

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Newly Diagnosed & Those Seeking Diagnosis

Are you or a loved one recently diagnosed with Marfan syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.

21 Sep

2:00 pm - 3:00 pm

Virtual

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Teen Talk

This is a teen group for teens ages 13-18 with VEDS, Marfan, Loeys-Dietz, or a related condition. Teens are invited to register to join in for a talk with other teens they can relate to.

21 Sep

7:30 pm - 9:00 pm

Zoom

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VEDS Partners and Spouses

This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences.

22 Sep

6:00 pm

Virtual

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Support for Young Adults with Marfan, VEDS, LDS and related conditions

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 fourth Tuesday of every month at 8 pm EST.

22 Sep

8:00 pm - 9:00 pm

Zoom

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VEDS Parents (Under 18)

If you are a parent of a child with VEDS, we invite you to join other parents to discuss the challenges of raising a child with this condition. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center, and Abby DeLong, VEDS parent and patient advocate.

23 Sep

8:00 pm

Virtual

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Camp Victory for Families: Georgia 2026

Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Enjoy your time with your entire family, participating in traditional camp activities in a safe and accessible environment. Registration fees have been significantly discounted thanks to the support of our generous donors, including Camp Twin Lakes. Scholarships […]

25 - 27 Sep

4:00 pm - 1:00 pm

Camp Twin-Lakes

210 S Broad Street, Unit 5, Winder, GA 30680

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LDS Connect International

The LDS International Connect is a support group for any person living with Loeys-Dietz Syndrome, as well as parents and caregivers of people with Loeys-Dietz Syndrome. This group is intended for community members living outside of the United States. It is conducted in English. The LDS International Connect meets on the 4th Monday of each […]

28 Sep

2:00 pm - 3:30 pm

Zoom

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