What the HHT?
A blog for the HHT community
Front Page Announcements
PAZ Clinical Trial Now Recruiting
HHT Centers of Excellences across the U.S. are now enrolling patients to participate in the new randomized clinical trial to assess the effectiveness of Pazopanib in reducing the severity of nose bleeds in adults with HHT.
To learn more about the trial and to understand if participation may be right for you, please visit the clinical trials section of our website.
By participating in clinical research, you can play a role in helping the development of new treatments and therapeutics – which have the potential to lead to a higher quality of life for generations of HHT patients.
Read MoreA 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!
Read MoreAngiogenesis 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.
Read MoreStanford 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.
Read MoreChildren’s Hospital of Philadelphia receives funding for pediatric HHT patients
I had the opportunity to visit our pediatric team at the Children’s Hospital of Philadelphia (CHOP) while in town for a conference. The team was awarded an internal grant of $200,000, and we wanted to highlight the work they propose to do with this project.
Dr. Lauren Beslow (Neurology) kindly volunteered to give me a tour of CHOP. This children’s hospital is one of the most beautiful I’ve seen and is completely designed with kids in mind. Carefully chosen artwork that is cheerfully representative of children with all kinds of abilities, lit-up sculptures of brains, sensory mats on the floor, tabletops with pieces that spin, bookshelves with free books to take home, and colors everywhere truly make CHOP seem like a giant play area where you happen to see a healthcare provider.
Read More