The Marfan Foundation
The Marfan Foundation is a national nonprofit for people with Marfan syndrome, Loeys-Dietz syndrome, VEDS, Stickler syndrome, and related genetic aortic and vascular conditions. It helps people learn about these conditions, ask a registered nurse questions, find experienced medical centers, join support groups, and connect through events.
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The Marfan Foundation offers several support groups throughout the year to help support individuals living with Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos syndrome (VEDS), and... Main Services support network support groups virtual support Serving adults young adults teens chronic illness individuals families with children
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What they offer 10
- Recently verified· Jun 29
Camp VictoryProgram
Family camps and kids camps are designed for children with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions.
- Recently verified· Jun 29
Help & Resource CenterService
A registered nurse answers questions about Marfan syndrome and related conditions and helps people find next steps.
- Recently verified· Jun 29
Virtual Support GroupsService
Online groups connect people with Marfan syndrome, Loeys-Dietz, VEDS, Stickler, and related conditions for support and shared resources.
- Recently verified· Jun 29
Marfan ConnectProgram
Monthly virtual support group for adults ages 18-50 with Marfan syndrome or a related condition.
- Recently verified· Jun 29
Teen Game NightEvent
Teens meet on Zoom for a check-in and online games with other teens in the community.
- Recently verified· Jun 29
VEDS ConnectProgram
Monthly virtual group for people with genetically confirmed VEDS to meet others and talk about daily challenges.
- Recently verified· Jun 29
Stickler ConnectProgram
Monthly virtual support group for people diagnosed with Stickler syndrome.
- Recently verified· Jun 29
Institution Directory / Find CareService
The foundation lists academic medical centers with experience in Marfan, VEDS, Loeys-Dietz, and related conditions.
- Recently verified· Jun 29
Educational OpportunitiesProgram
Webinars, conference sessions, regional symposiums, and videos teach people how to understand their condition and advocate for care.
- Recently verified· Jun 29
Research Grant ProgramGrant
The foundation funds investigators studying Marfan syndrome, LDS, VEDS, and related genetic aortic and vascular conditions.
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