Know the Signs, Fight for Victory

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September 2025

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.
04 Sep
5:00 pm
Virtual
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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.
08 Sep
Virtual
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Coping with Grief and Loss

Have you lost a loved one to Marfan syndrome or a related condition? Grief is a long and difficult process. Everyone experiences grief differently, but talking with others who can relate to what you are going through can be very helpful.
09 Sep
6:00 pm - 7:00 pm
Virtual
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VEDS Parent Support Group for Adult Children

If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. Jan Lynch, RN, of The Marfan Foundation’s Help & Resource Center, will host this group. * If your child is under 18, please register for the VEDS Parents Support Group * This group […]
10 Sep
7:00 pm - 8:00 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 […]
11 Sep
7:00 pm - 8:00 pm
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Walk For Victory – Cleveland

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: […]
13 Sep
12:00 pm - 3:00 pm
Cleveland Clinic - Crile Mall
E 100th St, Cleveland, OH 44106 (Greenspace between Euclid Ave. & Carnegie Ave.)
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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.
15 Sep
7:30 pm - 9:00 pm
Zoom
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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.
16 Sep
7:00 pm - 9:00 pm
Virtual
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