What the HHT?

A blog for the HHT community

Advocacy

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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A WIN on Capitol Hill for HHT!

You may recall that back in November 2020, Cure HHT reached out for help to urge the Senate to correct an oversight related to the Department of Defense’s (DoD) Peer Reviewed Medical Research Program (PRMRP) and add “vascular malformations” back among the conditions eligible for study – a designation that has advanced HHT research since 2015. Our…

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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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