Walk For Victory – South Florida

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: […]

01 Feb - 13 Jun

12:00 pm - 3:00 pm

T.Y. Park (Shelters 0-3)

3300 N Park Rd, Hollywood, FL 33021

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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.

25 Mar

8:00 pm

Virtual

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Kentucky Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS

The Marfan Foundation and Norton Children’s Heart Institute present an educational opportunity for individuals and families living with Marfan, Loeys-Dietz, VEDS, and related conditions. This informative and engaging event will provide the latest updates on treatment and quality of life issues, and includes opportunities to network with the speakers and connect with other people in […]

28 Mar

8:00 am - 2:30 pm

S. Randolph Scheen Family Conference Center Norton Children’s Hospital

231 E. Chestnut Street Louisville, Kentucky 40202

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Walk For Victory – Southern 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: […]

28 Mar

11:00 am - 2:00 pm

El Dorado East Regional Park

7550 E Spring St

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Stickler Connect

You are warmly invited to join our support group for individuals diagnosed with Stickler syndrome. This group offers a welcoming space to connect with others who understand your experiences and share valuable resources and information. Join us every first Wednesday of the month at 8:00 PM Eastern Time to share stories, find support, and build […]

01 Apr

8:00 pm - 9:00 pm

Zoom

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Marfan Connect

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.

02 Apr

5:00 pm

Virtual

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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.

06 Apr

7:30 pm

Zoom

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VEDS Connect

If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges we all face day-to-day.

07 Apr

8:00 pm

Virtual

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Insights from the LDS Natural History Study at NIH: Audiology and Otology

Insights from the LDS Natural History Study at NIH: Audiology and Otology offers an in-depth look at hearing and ear-related findings emerging from the Loeys-Dietz Syndrome (LDS) Natural History Study conducted at the National Institutes of Health. This webinar will be led by NIH experts Jeffrey Kim, MD, and Julie Christensen, M.S., who will share […]

08 Apr

1:00 pm - 2:00 pm

Zoom

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LDS Connect

Please Note: Due to our scheduling conflicts with our Conference in Atlanta, this group will meet on Thursday July 3, 2025 at 7pm EST. (instead of Thursday July 10, 2025) If you have been diagnosed with LDS, this group is specifically for you! This is an opportunity to meet others with LDS and talk about […]

09 Apr

7:00 pm - 8:00 pm

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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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A Time to Talk: Monday Matters!

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.

13 Apr

Virtual

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