Know the Signs, Fight for Victory

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January 2026

Hearing Issues in Stickler: Diagnosis and Treatment

Please join us for an educational webinar, Hearing in Stickler: Diagnosis and Treatment. This free virtual event is for individuals living with Stickler and family members. The featured speakers are: Steven Goudy, MD, MBA, FACS, chair of Otolaryngology at Macon & Joan Brock Virginia Health Sciences Eastern Virginia Medical School at Old Dominion University, and […]
21 Jan
7:00 pm - 8:00 pm
Zoom
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QUINTA CUMBRE ANUAL EN ESPAÑOL

Invitamos a pacientes y sus familias a unirse a nosotros en un día educativo sobre el síndrome de Marfan, el síndrome de Loeys-Dietz y el síndrome vascular de Ehlers-Danlos (VEDS). La cumbre de este año contará con presentaciones sobre los últimos avances en investigación y genética/planificación familiar. Además, expertos locales hablarán sobre cómo obtener atención […]
24 Jan
10:00 am - 12:30 pm
Virtual
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The Northern Illinois Chapter’s Annual Chocolate Fundraiser

February is Marfan Awareness Month! Let’s come together for our Chili and Chocolate Social for great fellowship and delicious food. We will also have boxes of World’s Finest Chocolate bars that you can pick up to sell to your family, friends, neighbors, co-workers, etc., to help raise money for research and programs funded through the Marfan Foundation. Check […]
25 Jan
1:00 pm - 3:00 pm
Westmont Community Center
Building 75 E. Richmond St. Westmont, IL 60559
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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 […]
26 Jan
2:00 pm - 3:30 pm
Zoom
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Choosing the Right Genetic Testing for Marfan, LDS, VEDS, and Stickler

Beyond Direct-to-Consumer: Choosing the Right Genetic Testing for Marfan, LDS, VEDS, Stickler, and Related Conditions Direct-to-consumer genetic testing can offer interesting insights into ancestry and common traits, but may fall short when it comes to identifying hereditary conditions like Marfan, VEDS, LDS, and Stickler. During this webinar, Maya Brown-Zimmerman, MPH, MS, CGC, a cardio genetic […]
26 Jan
7:00 pm - 8:00 pm
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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.
28 Jan
8:00 pm
Virtual
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February 2026

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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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.
02 Feb
7:30 pm
Zoom
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