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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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Singapore General Hospital Certified as HHT International Treatment Center

Increasing access to specialized care is an important part of Cure HHT’s mission. We’ve made significant progress in the last 30+ years, but work remains to realize a future where every patient has access to expert care. This gap in care is particularly present for many in our international community, which is why we’re unveiling a new “International Treatment Center” program aimed at increasing the number of knowledgeable physicians and care teams around the globe…

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Federal Funding Secured for U.S. Centers of Excellence

A message from Cure HHT Executive Director, Marianne Clancy It is with tearful joyfulness that I share this truly momentous news with you: Our HHT Center of Excellence (CoE) funding request made it into the final spending bill, and that bill was signed into law by President Biden just a few weeks ago. At long…

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CHRN: Creating a Roadmap for the Future

A Message from Marianne Clancy, Cure HHT Executive Director Transformational. That’s the word that keeps coming to mind since returning from Boston, the site of the 1st Cure HHT Research Network (CHRN) International Convening. I have been part of this foundation for nearly 30 years, and I can honestly say that this stands out as…

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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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