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Announcements, Blog Posts, News Articles

2022 Newsletters now available online!

October 7, 2022

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

September 14, 2022

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

August 25, 2022

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

August 21, 2022

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

June 28, 2022

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

June 24, 2022

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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Man swims across Torch Lake for HHT Awareness

August 30, 2017

Fox 2 | 2017

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Rep. David Price accepts award for HHT funding

August 24, 2017

The Daily Tar Heel | 2017

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Afraid of Spiders? When Telangiectasia is More than just Spider Veins

August 1, 2017

La Jolla Light | 2017

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Dan Siani’s legacy grows with fight against HHT, disease that took his life

September 13, 2016

Staten Island Live | 2016

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What is HHT and Might I have it?

June 1, 2016

The Scope | 2016

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Navigating Through Brain’s Vasculature: A Trip to UCSF’s Neuro Cath Lab

January 15, 2016

medGadget | 2016

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“Think Like a Doctor: The Quarterback’s Headache” (Part 2) by Lisa Sanders, M.D.

September 4, 2015

“[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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Quarterback

“Think Like a Doctor: The Quarterback’s Headache” (Part 1) by Lisa Sanders, M.D.

September 3, 2015

“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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