June Awareness – Be an HHT Changemaker!
June marks one of the most important months in the calendar year for those who suffer from HHT, as it’s National HHT Awareness Month. This year we are focusing on “HHT Changemakers” – celebrating the incredible strength, resilience, and commitment of our mighty community in our fight against HHT.
You don’t have to be a researcher or physician or scientists to be a Changemakers – Changemakers are individuals just like all of you! Patients, caregivers, supporters and friends who tirelessly advocate for greater awareness, better treatment, and – one day – a cure. Your passion and dedication inspire us every day, and together, we can achieve remarkable things. When we come together as a community to fight for the change we want to see, we are all changemakers. Learn the many ways you can become an HHT Changemaker today! Learn more >>
A Monumental $128 Million Step Forward for HHT Research
Today is a monumental day for HHT. The new biotechnology company, Diagonal Therapeutics, officially launched and we wanted to share more about why this is news you simply can’t miss!
In short, Diagonal’s lead program is focused on developing an innovative treatment not just to alleviate the symptoms of HHT – but using antibodies to reverse the formation of vascular malformations altogether. That’s right, there is now a biotechnology company, backed by $128 million in Series A financing, focused entirely on a curative HHT therapy.
For months, Cure HHT has been collaborating with Diagonal’s management team to help make this day a reality. We have connected them to leading HHT scientists to help them further develop their program, and have spent countless hours meeting with venture capital firms to educate them on the burden of this disease and help Diagonal secure funding to launch.
HHT Continuing Education Program for medical professionals
We are excited to announce the launch of the HHT Continuing Education Hub, an online platform through which providers of all specialties can take courses on various HHT topics!
Many medical providers are required to earn a certain amount of credits per year. Now, providers seeking to further their HHT knowledge can receive continuing education credits (CE or CME) when they complete our courses.
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.
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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
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