2022 Newsletters now available online!
Scan the pages of our printed 2022 newsletters (spring, summer and fall) as a pdf or Flipbook. Catch up on recent scientific news, progress, leadership changes and more.
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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…
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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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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…
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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…
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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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Afraid of Spiders? When Telangiectasia is More than just Spider Veins
La Jolla Light | 2017
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Dan Siani’s legacy grows with fight against HHT, disease that took his life
Staten Island Live | 2016
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“Think Like a Doctor: The Quarterback’s Headache” (Part 2) by Lisa Sanders, M.D.
“[w]e challenged Well readers to take on the case of a 15-year-old boy with the worst headache of his…
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“Think Like a Doctor: The Quarterback’s Headache” (Part 1) by Lisa Sanders, M.D.
“The Challenge: Can you figure out what is giving this 15-year-old boy the worst headache of his life? Every month…
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