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.

16 Apr

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 […]

17 Apr

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.

17 Apr

7:30 pm

Virtual

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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.

18 Apr

5:00 pm - 6:00 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.

19 Apr

3:00 pm

Virtual

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Walk For Victory – Raleigh

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: […]

20 Apr

12:00 pm - 3:00 pm

Laurel Hills Park

3808 Edwards Mill Rd., Raleigh, NC 27612

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Walk For Victory – Atlanta

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: […]

21 Apr

12:00 pm - 3:00 pm

Chastain Park Ave NW & Dudley LN NW

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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 […]

22 Apr

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.

23 Apr

6:00 pm

Virtual

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VEDS Parents

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.

24 Apr

8:00 pm

Virtual

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Pain Management

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.

25 Apr

7:00 pm

Virtual

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LDS Women’s Health Beyond Family Planning

This webinar will be presented by a panel of medical experts and moderated by Melissa Russo, MD. We will discuss women’s issues beyond family planning, including, but not limited to, endometriosis, perimenopause and menopause, hormonal support, and uterine prolapse. There will be time to get your questions answered. While the content will be tailored to […]

25 Apr

7:30 pm - 9:00 pm

Virtual

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