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.
Calendar
Yearly Monthly Weekly Daily List
June 2026
VEDS Connect
If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges we all face day-to-day.
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 […]
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.
Walk For Victory – Pacific Northwest (Seattle)
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: […]
Walk For Victory – Milwaukee
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: […]
HeartWorks NYC 2026
On June 9, 2026, the Marfan Foundation welcomes guests to Cipriani 42nd Street for Heartworks NYC 2026, an extraordinary evening celebrating 45 years of The Marfan Foundation’s impact, progress, and hope. This year’s gala, with returning Dinner Chairs Karen Murray and Sinclair Li, honors the Foundation’s legacy of advancing research, improving patient care, and supporting individuals and families affected by Marfan […]
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.
Support for Parents/Guardians of Children with Early-Onset (Neonatal) Marfan Syndrome
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.
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 […]
Walk For Victory – Chicago
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: […]
Walk For Victory – Boston
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: […]
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