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.
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.
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!
UAB named HHT Center of Excellence
Cure HHT is excited to announce that The University of Alabama at Birmingham (UAB) is now certified as an HHT Center of Excellence — providing expert, comprehensive care for HHT patients. UAB is currently accepting new patients, and welcomes your inquiries!
Under the guidance of co-Directors Drs. Jesse Jones and Theresa Caridi, the specialties that support care through the UAB COE include ENT, cardiology, gastrointestinal/ hepatology, genetics, interventional radiology, neuroradiology, neurosurgery, and pulmonology.
Root for Awareness – Crowdfunding Campaign
This year, in place of our virtual walk – Strides for Strength – we thought we’d change things up and branch out (pun intended) as we spotlight the importance of understanding your family’s HHT roots. Your stories of both struggle and triumph help people take notice! Fighting for awareness and making HHT more recognizable, however, does come at a cost. But hey, nobody said we couldn’t have a little fun while we do it! Rally your family and friends to help share your story, raise money for an amazing cause, and compete to WIN AMAZING PRIZES along the way!
Vaderis Therapeutics Announces Series B Financing and Initiation of the Global Phase 3 HEROIC Study
Cure HHT is thrilled to share this important milestone from Vaderis Therapeutics: the initiation of the global Phase 3 HEROIC study evaluating engasertib, an investigational oral therapy being studied for people with moderate-to-severe hereditary hemorrhagic telangiectasia.
Atavistik Bio Partners with Cure HHT Clinical Trial Network to Advance Development of ATV-1601 for HHT
Cure HHT is proud to partner with Atavistik Bio as it advances ATV-1601, an investigational oral therapy for people with moderate to severe HHT. With Atavistik now joining the Cure HHT Clinical Trial Network, we will serve as the patient advocacy partner for the Harmony-HHT Phase 1/2 study—helping provide education, build awareness, and engage the global HHT community as the trial progresses.
Diagonal Therapeutics Announces First Patient Dosed In Phase 1/2 Diamond Clinical Trial Of Diag723 For HHT
Cure HHT is thrilled to share that the first patient has been dosed in Diagonal Therapeutics’ Phase 1/2 DIAMOND clinical trial evaluating DIAG723 for hereditary hemorrhagic telangiectasia (HHT). DIAG723 is designed to restore signaling in the pathway disrupted by the genetic mutations that cause HHT, with the potential to address the underlying biology of the disease rather than only managing its symptoms. The DIAMOND trial will evaluate the treatment’s safety and tolerability, as well as its preliminary effects on nosebleeds, anemia, and other HHT-related measures. For a community that currently has no approved treatment specifically for HHT, the launch of this trial represents an exciting and deeply meaningful step forward.
Cure HHT is the official patient advocacy partner aligned with this effort and is helping build awareness and interest across the global HHT community. Diagonal Therapeutics is also a partner in the Cure HHT Clinical Trial Network, making this the first clinical trial announcement to emerge from the network.
“This announcement belongs not only to the researchers and partners advancing this work, but also to the people affected by HHT who make progress possible,” said Marianne Clancy, Chief Executive Officer of Cure HHT. “Participating in an early-stage clinical trial requires tremendous courage, hope, time, and personal commitment. We are profoundly grateful to every individual and family who chooses to contribute to the development of new treatments—not only for themselves, but for the entire global HHT community and for generations still to come.”
Interested in the Study?
The DIAMOND trial is currently enrolling at clinical sites in Australia and New Zealand, but additional locations are expected to open around the world. Help Diagonal Therapeutics understand where interest is strongest—and where future trial sites could have the greatest impact—by completing Cure HHT’s clinical trial interest form.
Cure HHT Announces Historic Federal Research Designation for Hereditary Hemorrhagic Telangiectasia
New PRMRP designation creates a dedicated pathway for HHT-focused research through the Department of Defense’s Congressionally Directed Medical Research…
Cure HHT’s Registry Research Selected for Oral Presentation at American Society of Hematology 2025 Annual Meeting
Presentation will raise critical awareness of HHT among hematologists, expanding understanding and earlier recognition of this underdiagnosed genetic disease…
Cure HHT Leads Global Breakthrough in Bleeding Standards, Paving the Way for Future HHT Therapies
International Consensus Report Published in the American Journal of Hematology Aims to Transform HHT Research, Treatment, and Clinical Trials
This Landmark HHT Study Could Shift National Attention
We’re excited to share some truly important news for the HHT community. A major new study done in collaboration…
