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What the HHT?

A blog for the HHT community

A major milestone for HHT treatment!

I am reaching out to share the news of a truly momentous milestone for both our organization and our community; the Pazopanib clinical trial has officially launched!

This means Cure HHT is now one of the few patient advocacy organizations in the world that is directly sponsoring a Phase II/III clinical trial of an investigational drug product that we own. I wanted to explain what this means, reflect on how we reached this point, and share why this is so monumental!

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Angiogenesis Publishes 2022 Conference Summaries

The 14th HHT International Scientific Conference brought together 300 in-person attendees and 50 virtual viewers to present and discuss the most recent and impactful scientific and clinical advances in HHT.

The meeting had a record number of 209 original research abstracts submitted and the top scoring abstracts were selected for oral presentations. The Executive Summary and Abstract Summary published in Angiogenesis highlight the high-caliber HHT research presented in Portugal from trainees, scientists, and clinicians around the world.

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Stanford HHT CoE Receives $2.8M Grant

Over the years and thanks to the support of our community, we’ve been able to grow the number of clinicians and researchers focusing on advancing our understanding and treatment of HHT.

We’re excited to announce another major step forward in that fight! Dr. Edda Spiekerkoetter and her scientific colleagues at the Stanford HHT Center of Excellence were recently awarded a $2.8 million (yes, you read that right!) NIH/ NHLBI grant focused on the understanding and targeting of molecular and cellular events responsible for the development, growth, and regression of pulmonary AVMs.

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UMH Certified as HHT Center of Excellence

UHealth – University of Miami Health System has been officially certified as an HHT Center of Excellence. This marks another significant step forward in our fight to increase access to specialized care for our community! By earning this designation, UHealth, part of the University of Miami Miller School of Medicine, joins our growing network of more than 30 Centers of Excellence across North America.

Miami is currently accepting new patients and welcomes inquiries from patients across South Florida, the Caribbean and Latin America. The team includes many Spanish-speaking experts!

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