What the HHT?

A blog for the HHT community

Front Page Announcements

14th HHT International Scientific Conference

On behalf of the Organizing Committee, we would like to invite you to join us in Estoril, Cascais, Portugal for the 14th HHT International Scientific Conference. We will host a Welcome Reception on September 28th and scientific sessions on September 29-October 2nd, 2022.  The program this year will feature several outstanding keynote speakers, multiple cross-disciplinary sessions, extensive…

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FREE Genetic Testing for Rare Diseases

The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected rare disease who do not have a genetic diagnosis. The goal of their project is two-fold: (1) provide access to testing for families that are genetically undiagnosed and (2) discover previously un-identified gene…

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Become a Tissue Donor

Duke University, through a separate BVMC project, is collecting vascular malformations (VMs) associated with HHT to search for somatic mutations, possibly occurring in different genes than the ones already identified. All HHT patients undergoing surgery to remove an AVM from any organ (i.e., liver, lung, brain, skin, etc.), are encouraged to consider donating  tissue. You do not need to have a brain AVM to participate in this study project.

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TDC Leaps for a Cure

TDC Leaps for a Cure – 2nd annual walk to cure HHT. The TDC dance community is coming together again on September 17, 2022 to support and fundraise for HHT research, a cause very personal to beloved studio owner, Maria Mahoney and her family. All students, families, friends and alumni are invited to participate in this important cause. Sign up, fundraise, and join TDC in spreading the word about HHT! 

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FB Live Event: Back to School (Recorded)

Now available in our Resource Library – Facebook Live event (recorded) featuring Cure HHT Chief Medical Officer, Scott Olitsky, MD, and school nurse, Leslie A. Perry, RN, MS. As children gear up and get ready to head back to school, the duo covers a range of topics from how to discuss HHT with your school…

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