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HHT June Awareness Month

Just one HHT diagnosis has the potential to save the lives of many! As a genetic disorder – passed down from parent to child – the diagnosis of HHT for a single family member can branch into answers and life-saving treatments for several generations of a family! When we say HHT awareness saves lives…it’s not an exaggeration.

Though we have made great strides in shining a light on HHT over the years, we still need your support to make HHT a more recognized disease! Donate today to help HHT Awareness take root in your community — plant the seed of awareness!

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One in a Million

One year ago today, I underwent a liver transplant due to a genetic condition called HHT (Hereditary Hemorrhagic Telangiectasia), or Osler-Weber Rendu Syndrome. Roughly 1 in 5,000 people are diagnosed with HHT. Of that 1 in 5,000, up to 75%, have liver involvement. Of that 75%, only 8% become symptomatic. The data gets spotty after this, and from my research, I can only find 59 documented cases since 1985 of liver transplantation related to HHT.

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HHT June Awareness Month

N. Kristin

One in a Million

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BBC News: Jersey woman calls for more awareness of rare condition

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14th Annual Stoner Open to Benefit Cure HHT

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E-News: Insider Connection

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Iron and HHT: Boosting Your Health & Energy with Iron-Rich Foods (RECORDED)

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Singapore General Hospital Certified as HHT International Treatment Center

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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.

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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.

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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.

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International HHT Guidelines

EXPLORE RECOMMENDATIONS BY TOPIC AREA, VIEW CUSTOM CARE CHECKLISTS, AND MUCH MORE.

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.

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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
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