Patient resources for Marfan syndrome
Places to find practical help and support. Each organization sets its own services and eligibility.
Communities and additional support
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Loeys-Dietz Syndrome Foundation (division of The Marfan Foundation)
Condition-specific resource · Based in the United States
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Marfan Trust (UK)
Condition-specific resource · Based in the United Kingdom
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The Marfan Foundation
Condition-specific resource · Based in the United States
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The VEDS Movement (division of The Marfan Foundation)
Condition-specific resource · Based in the United States
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Connective Tissue Coalition (CTC)
General support · Based in the United States
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Genetic Aortic Disorders Association Canada (GADA Canada)
General support
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Marfan Foundation Virtual Support Groups
Condition-specific resource · Peer support
Visit peer community -
Marfan Support Group
Condition-specific resource · Peer support
Visit peer community -
Marfan Syndrome | Smart Patients
Condition-specific resource · Peer support
Visit peer community -
The Marfan Forum
Condition-specific resource · Peer support
Visit peer community -
Young Adults With Marfan Syndrome & Related Disorders
Condition-specific resource · Peer support
Visit peer community -
Connective Tissue Disorders Support Community (Inspire)
General support · Peer support
Visit peer community
Further information
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Orphanet condition information
Condition-specific resource
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