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What the HHT?

A blog for the HHT community

Support HHT Centers of Excellence through HRSA!

We made it through the House, but now we need final Senate support! Thanks to your recent advocacy, in July 2021 the U.S. House of Representatives approved legislation that included $2 million in funding that would go directly to a new “National HHT Diagnosis and Treatment Initiative,” providing funds to our existing CoEs to expand staffing and…

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Help KISS HHT goodbye!

February is Rare Disease Month and we want to SHOW OUR STRIPES in a big way! During our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day®), for each donation made (no matter the amount), we’ll honor your loved ones who are either affected by HHT (patients, caregivers and HHT supporters) or who have sadly lost their…

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Rare as One: Cure HHT receives CZI grant extension

We are thrilled to announce that our grant in the Chan Zuckerberg Initiative – Rare As One will be extended for another year! It’s hard to believe it has been 2 years since we were first selected as one of only thirty rare disease organizations to be a part of CZI – Rare as One.…

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