What the HHT?

A blog for the HHT community

Cure HHT 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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UF Health named HHT Center of Excellence

Cure HHT is excited to announce that UF Health has been named the first HHT Center of Excellence in Florida and the 31st CoE in North America. Cure HHT recognizes hospitals equipped with the personnel, expertise, commitment and resources to provide comprehensive evaluation, treatment and education to individuals with HHT and their families. Recognition as an…

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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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