Patient resources for Hereditary hemorrhagic telangiectasia
Places to find practical help and support. Each organization sets its own services and eligibility.
Communities and additional support
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Brain Vascular Malformation Consortium (BVMC)
General support · Based in the United States
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CHORUS — Comprehensive HHT Outcomes Registry of the United States
General support · Based in the United States
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HHT Europe
General support
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HHT Ireland
General support
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Hereditary Hemorrhagic Telangiectasia (HHT) Awareness — Facebook Group
Condition-specific resource · Peer support
Visit peer community -
Cure HHT — Official Facebook Page
General support · Peer support
Visit peer community -
HHT on PatientsLikeMe
General support · Peer support
Visit peer community -
HHT on RareConnect
General support · Peer support
Visit peer community -
PH and HHT: What's the Connection? — Facebook Group
General support · Peer support
Visit peer community
Further information
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GARD condition information
Condition-specific resource
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Orphanet condition information
Condition-specific resource
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