Know the Signs, Fight for Victory

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May 2024

Walk For Victory – Pittsburgh

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: […]
18 May
12:00 pm - 3:00 pm
Highland Park, (Rhododendron Shelter)
Lake Drive, Pittsburgh, PA 15206
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Walk For Victory – Denver

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: […]
19 May
12:00 pm - 3:00 pm
Berkeley Lake Park
4601 W 46th Ave Denver, CO 80212
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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 May
7:30 pm - 9:00 pm
Zoom
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HeartWorks NYC

Your presence will ignite the sparkle at the iconic Rainbow Room on May 21 when you attend the Marfan Foundation’s signature event, the HeartWorks Gala in Manhattan. You’ll help save and improve the lives of people impacted by genetic aortic and vascular conditions while you enjoy a brilliant evening of cocktails, dinner, and entertainment amid the company of […]
21 May
The Rainbow Room NYC
30 Rockefeller Plaza 65th Floor, New York, NY 10112
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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 May
7:00 pm - 9:00 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.
22 May
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.
23 May
7:00 pm
Virtual
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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 […]
27 May
2:00 pm - 3:30 pm
Zoom
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