Walk For Victory – Nashville

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: […]

11 Apr - 16 May

11:00 am - 2:00 pm

Seaver Park

3021 Lealand Ln, Nashville, TN 37204

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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.

20 Apr

7:30 pm - 9:00 pm

Zoom

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Best Practices for Preclinical Thoracic Aortopathy Studies

Join the Genetic Aortic Network on April 21 at 11:00 a.m. ET for a webinar on highlights from “Recommendations for Design, Execution, and Reporting of Studies on Experimental Thoracic Aortopathy in Preclinical Models” (Arteriosclerosis, Thrombosis, and Vascular Biology, 2025). During this session, Alan Daugherty, PhD, DSc (University of Kentucky, USA), Scott LeMaire, MD (Geisinger, USA), […]

21 Apr

11:00 am - 12:00 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.

21 Apr

7:00 pm - 9:00 pm

Virtual

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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.

22 Apr

8:00 pm

Virtual

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Walk For Victory – Tampa

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: […]

25 Apr

10:00 am - 1:00 pm

Water Works Park

1710 N Highland Ave, Tampa, FL 33602

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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: […]

25 Apr

11:00 am - 2:00 pm

Laurel Hills Park

3808 Edwards Mill Rd., Raleigh, NC 27612

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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 […]

27 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.

28 Apr

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.

28 Apr

8:00 pm - 9:00 pm

Zoom

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Memorable Moments Luncheon

The Memorable Moments Luncheon is a special event designed to highlight and celebrate significant programs that make a difference in the community. Led by Co-Chairs Alix Jennings & Barbara Lerman, the luncheon will highlight three key programs: Camp Victory, The Marfan Foundation Annual Conference, and The Sydney Lerman Hospitality Program. This luncheon aims to bring […]

03 May

11:30 am - 2:00 pm

Avra (NYC)

14 E 60th St, New York, NY 10022

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Teen Game Night

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 the fun. We will be playing games using the Jackbox game series.

04 May

7:30 pm

Zoom

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