What the HHT?
A blog for the HHT community
Front Page Announcements
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.
Read MoreNo-Cost Genetic Testing for HHT & Other 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 singe gene disorders 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…
Read MoreFB 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…
Read MoreUF 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…
Read MoreSpreading Awareness 1 Mile at a Time
“What is HHT?” It’s a question Marijo McCune gets asked often, and it’s exactly what she hoped to accomplish when she made the decision to create the license plate that reads, ‘CURE HHT.’ “Though I may never know how many people have asked Google [What is HHT], I’m sure there’s been many. They say curiosity…
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