Meta: Accelerating Research on Rare Diseases

March 19, 2021 | Meta | By Jennifer L. Minnick “At a recent workshop about Meta, Executive Director of Cure HHT Marianne Clancy noticed a new scientific paper about the rare disease she’s focused on curing — in the form of a case report from Sudan. Hereditary Hemorrhagic Telangiectasia, or HHT, is a genetic disorder that causes…

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Las Guías Internacionales de HHT: Anemia (Recorded)

Las Guías Internacionales de HHT Anemia 27 de Marzo | 9:00 a.m. (ET) (10 a.m. Argentina) El Dr. Marcelo Serra, médico internista y Director de la Unidad HHT, Hospital Italiano de Buenos Aires (Centro de Referencia) y la Dra. Yesica Lijdens (Otorrinolaringologa de la Unidad HHT Hospital Italiano de Buenos Aires) nos brindarán información sobre…

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International HHT Guidelines: GI Bleeding Management (Recorded)

International HHT Guidelines Webinar Series Dr. Murali Chakinala, Co-Director, Washington University HHT Center of Excellence and Dr. Vivek Iyer, Director, Mayo Clinic HHT Center of Excellence as they discuss how to recognize the signs and symptoms of GI bleeding in HHT. Drs. Chakinala and Iyer will further dissect this subject area by taking the audience…

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Meta Blog

Meta: Accelerating Research on Rare Diseases

Guidelines Series - 6 - Anemia (espanol)

Las Guías Internacionales de HHT: Anemia (Recorded)

Guidelines Webinar Series - 3 - GI Bleeding

International HHT Guidelines: GI Bleeding Management (Recorded)

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Lift Your Heart for HHT Celebration Kickoff!

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Women in Science Day 2021 – International

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Rare Disease Month


PATH – Now Recruiting!

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A WIN on Capitol Hill for HHT!

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International HHT Guidelines


Find the most up-to-date resources to manage your HHT.

Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, is an inherited disease that leads to malformed blood vessels in multiple organs of the body and typically begins with nosebleeds during childhood. HHT can result in serious health problems if not promptly diagnosed and treated. Our mission is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.

1 in
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels that affects approximately 1 in 5,000 people worldwide.
of people with HHT are undiagnosed