ACT NOW! HHT Federal Funding in Jeopardy!

Over the past few years, our HHT researchers have received significant funding for “Vascular Malformations,” a serious manifestation of HHT, through the Department of Defense’s (DoD) Peer Reviewed Medical Research Program (PRMRP). We recently learned that VM’s were inadvertently left OUT of the PRMRP for 2021. Your help is urgently needed in getting VM’s back…

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The HHT Clinical Guidelines Are Here!

The HHT International Guidelines are used in HHT Centers of Excellence (CoE) worldwide for clinical decisions related to HHT diagnosis, screening, treatment and overall patient care management. These guidelines are used to set the standard of care to be used internationally for the diagnosis and treatment of HHT. Here you will find the most up-to-date…

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PATH – Now Recruiting!

The PATH Study is exploring the use of an oral medication called pomalidomide for the treatment of nosebleeds in HHT at 11 research centers across the United States. Find centers and check your eligibility.

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Lindsay Vos Delivers Keynote Speech at the HFA Annual Symposium

Many of you may recognize Lindsay Vos’s name, and if you’ve ever had the opportunity to meet Lindsay or hear her speak, you’d undoubtedly have a hard time forgetting her infectious smile and positive attitude. After being diagnosed with HHT and undergoing a 14 hour surgery to remove a brain AVM in 2017, Lindsay has continued…

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Ask The Doctor: Tackling Anemia and Iron Deficiency (Recorded)

Feeling tired? Weak? Short of Breath? These symptoms could be related to HHT induced anemia and iron deficiency. With anemia affecting 50% of people diagnosed with HHT, and many not even aware that they have anemia. Watch our “Ask the Doctor” series with Dr. Scott Olitsky, Cure HHT Chief Medical Officer, as he addresses many…

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Cure HHT’s 2020 Robert E. Berkman Leadership Award Recipient

Up Close and Personal with Christopher Hughes, PhD – Cure HHT’s 2020 Robert E. Berkman Leadership Award Recipient by Phyllis Loveland In recognition of Robert E. Berkman’s exemplary leadership, we honor his legacy through the creation of the Robert E. Berkman Leadership Award, to recognize those members of the Cure HHT Community who exhibit the…

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Find Support

Connect with the Cure HHT community and find the latest resources including treatment centers, patient conferences, webinars and more.

Research for a Cure

Thanks to our supporters we're making exciting strides - gaining new insights into the cause, development and progression of this disease.

Who We Are

Constantly working for a brighter future for those with HHT through awareness, education and research - Cure HHT is the cornerstone of the HHT Community.

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

Cure HHT & Backpack Health

Cure HHT has partnered with Backpack Health to help individuals and families with HHT. We are excited to offer the Backpack app, designed for Cure HHT, as a FREE, IOS, Android and Web-friendly tool!