Cure HHT Takes on Capitol Hill
This month, our group of Cure HHT staff, patient advocates, physicians and researchers descended upon Capitol Hill with the mission of shedding light on the importance of protecting and expanding federal funding for HHT. In all, we had 35 appointments with congressional and senatorial office members and staff – including a meeting with Senator Susan Collins. Our advocacy efforts wrapped up with a Congressional Briefing from inside the Capitol Building, where we presented on the impact federal funding can have in changing the trajectory of this disease.
Leaving a Lasting Legacy Through Planned Giving
One of the most powerful ways to contribute to Cure HHT’s mission is through planned giving, such including Cure HHT in a will or living trust, establishing a life-income plan, or naming us as a beneficiary in an insurance policy. For those passionate about supporting causes close to their hearts, planned giving offers a powerful opportunity to make a lasting impact for generations to come.
Community members who have remembered Cure HHT in their estate plans join an honorary group we call “The Cornerstone Society,” a membership that signifies our warm appreciation of your lasting contribution.
Send hearts & kisses this special Rare Disease Month!
February is Rare Disease Month and we want to show our stripes and appreciation on this very special LEAP year! Honor someone special to you who is affected by HHT by participating in our annual Kisses for a Cure tribute celebration from February 14 through February 29 This year, Rare Disease Day® will be celebrated on its official and rarely occurring date, February 29th, which occurs only once every four years!
Dr. Anthony Anzell Presented with $20,000 Research Grant
The University of Pittsburgh’s Dr. Anthony Anzell Presented with $20,000 Research Grant from Uplifting Athletes Dr. Anzell is among 10…
Cure HHT Canada now registered as a charitable organization in Canada
We are excited to announce the establishment of Cure HHT Canada as a registered, tax-deductible charitable organization in Canada! We heard your feedback on how important this designation is to you and we’ve worked diligently over the last two years to reach this milestone. The establishment of Cure HHT Canada marks a concentrated effort to expand and increase our support of our community in Canada!
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Cure HHT Announces Palmer Family Fund Young Investigator Travel Award Recipients for 16th HHT International Scientific Conference
Forty-six emerging investigators will receive travel support to present and participate at the global HHT scientific gathering in Cape Cod
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
A History of Pazopanib
There are no FDA-approved therapeutics for the treatment of HHT. Cure HHT sought to change that. In many ways,…