Know the Signs, Fight for Victory

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October 2025

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 Oct
7:00 pm
Virtual
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Camp Victory for Families: California 2025

Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Have fun with your entire family, participating in traditional camp activities in a safe, accessible environment. Registration fees have been significantly discounted thanks to the support of our generous donors, especially Keck Medicine of USC Cardiac and […]
24 - 26 Oct
4:00 pm - 10:00 am
Pali Retreat
30778 Highway 18, Running Springs, CA 92382
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Cincinnati Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS

The Marfan Foundation and Cincinnati Children’s Hospital Medical Center 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 […]
25 Oct
8:00 am - 1:00 pm
Cincinnati Children’s Hospital Medical Center
3333 Burnet Avenue, Cincinnati, OH 45229 Room: D1.23/Sabin Auditorium
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Walk For Victory – St. Louis

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: […]
26 Oct
11:00 am - 2:00 pm
Queeny Park
550 Weidman Rd., St. Louis, MO 63131
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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 Oct
2:00 pm - 3:30 pm
Zoom
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Ask the VEDS Experts: Fireside Chat for Action Month

Join leading experts in Vascular Ehlers-Danlos syndrome (VEDS) for a special Action Month Fireside Chat. In this webinar, Drs. Sherene Shalhub, Peter Byers, Hal Dietz, and Shaine Morris will answer questions submitted by the VEDS community ahead of time, covering key topics like diagnosis, management, research, and living well with VEDS. This event offers a […]
27 Oct
6:00 pm - 7:15 pm
Zoom
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November 2025

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.
03 Nov
7:30 pm
Zoom
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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 […]
05 Nov
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.
06 Nov
5:00 pm
Virtual
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