Know the Signs, Fight for Victory


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June 2024
Global Virtual Conference

The Marfan Foundation’s Global Virtual Conference

The Marfan Foundation’s Global Virtual Conference connects people living with genetic aortic and vascular conditions, their loved ones, healthcare providers, and researchers from around the world for a unique event that holistically explores the many facets of life with Marfan, Loeys-Dietz, VEDS, and related conditions. Topics include advancements in medical management, mental health and well-being, […]
17 - 22 Jun
All Day

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.
17 Jun
7:30 pm - 9:00 pm

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.
18 Jun
7:00 pm - 9:00 pm

Walk For Victory – Iowa

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: […]
22 Jun
12:00 pm - 3:00 pm
Raccoon River Park, Shelters: Coneflower A-C
2500 Grand Ave West Des Moines, IA 50265

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 […]
24 Jun
2:00 pm - 3:30 pm

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.
26 Jun
8:00 pm

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.
27 Jun
7:00 pm
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