Name: Newly Diagnosed & Those Seeking Diagnosis
Start: 2026-05-18
End: 2026-05-18
Location: Virtual

May 2026

hands on a laptop with a stethoscope next to it

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.

18 May

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.

18 May

7:30 pm - 9:00 pm

Zoom

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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.

19 May

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 […]

20 May

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.

20 May

7:30 pm

Virtual

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LDS Connect International

Please Note: Due to Memorial Day (US) this group will meet on Tuesday May 27, 2025 at 2pm EST. (Instead of Monday May 26, 2025) 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 […]

25 May

2:00 pm - 3:30 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.

26 May

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.

26 May

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.

27 May

8:00 pm

Virtual

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Rescheduled LDS Connect International

Please Note: Due to Memorial Day (US), this group will meet on Thursday, May 28, 2026, at 2 pm EST. (instead of Monday, May 25, 2026) 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 […]

28 May

2:00 pm - 3:30 pm

Zoom

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Walk For Victory – Northern California

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 make life better for our community: […]

30 May

11:00 am - 2:00 pm

Stanford Center for Academic Medicine

453 Quarry Rd, Palo Alto, CA 94304