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What the HHT?

A blog for the HHT community

Celebrate Rare on Rare Disease Day (Feb 29th)

Rare Disease Day® is February 28th! This year, Rare Disease Month is particularly special as it marks the 40th anniversary  of the Orphan Drug Act (ODA), a landmark law that has benefited millions of Americans living with rare disease, including the HHT community!

The law helps incentivize and catalyze rare disease research. With the help of ODA and years of Cure HHT’s own advocacy efforts, we now have three clinical trials underway in HHT!

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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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June Awareness Month

HHT Awareness Month is here, and we are expanding our reach on a world-wide level as we launch our #LetTheWorldHearUs campaign.

The world is all around…waiting to hear your voice. Sharing your HHT experiences—the good and the bad—can make all the difference. By joining us this Awareness month, together we can reach the ears of the health care industry, legislative decision-makers, and the global population to bring awareness forth about a disease that impacts 1 in 5000 people worldwide. With 90% of HHT patients still undiagnosed, HHT has gone unheard for far too long. We need to change that once and for all!

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12th Annual Stoner Open

12th Annual Stoner Open July 9, 2021 | 1:30 p.m. (EST) Farmstead Golf & Country Club Spend the day on the green to support Cure HHT! Join Steve Stoner and friends at the Farmstead Golf & Country Club for the 12th year in a row to support an important cause. Let’s make this year’s tournament…

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