Latest News

Announcements, Blog Posts, News Articles

CHRN: Creating a Roadmap for the Future

March 25, 2022

A Message from Marianne Clancy, Cure HHT Executive Director Transformational. That’s the word that keeps coming to mind since returning from Boston, the site of the 1st Cure HHT Research…

The 1st Cure HHT Research Network International Convening is just around the corner and taking place in Boston from March 18-20! Our HHT patient advocates, leading physicians and scientists from around the globe have…

FB Live Event: Dr. Scott Olitsky – Are Clinical Trials Right for Me?

February 14, 2022

Join Cure HHT Chief Medical Officer, Scott Olitsky, MD for a Facebook live event as he discuss the components of a typical clinical trial, why they are necessary, and how…

Help KISS HHT goodbye!

February 11, 2022

February is Rare Disease Month and we want to SHOW OUR STRIPES in a big way! During our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day®), for each donation made…

HHT Rare! Grab Your Swag

February 11, 2022

Pick up your HHT RARE swag today during Rare Disease Awareness Month in our online store, and start spreading HHT awareness while benefiting an amazing cause!

Rare as One: Cure HHT receives CZI grant extension

February 10, 2022

We are thrilled to announce that our grant in the Chan Zuckerberg Initiative – Rare As One will be extended for another year! It’s hard to believe it has been…

Blog: What the HHT?

Uplifting Athletes Support the Rare Disease Community

By Ashley Watkins | February 6, 2024

An HHT patient conference can change your life

By Ashley Watkins | January 16, 2024

Ann Trussell: “My promise to my daughters…I will do everything in my power to find a cure!”

By Ashley Watkins | December 27, 2023

Gabby Choi: There is so much power in patients advocating for themselves…

By Ashley Watkins | December 21, 2023

They told John he only had a month left to live…he knew he had to keep fighting

By Ashley Watkins | December 12, 2023

HHT rocked our world

By Ashley Watkins | November 29, 2023

HHT in the News

A Monumental $128 Million Step Forward for HHT Research

April 3, 2024

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.

BBC News: Jersey woman calls for more awareness of rare condition

April 13, 2023

BBC Jersey (UK) Jersey woman calls for more awareness of rare condition – “A Jersey woman who has a rare genetic condition that affects her blood vessels is calling for greater awareness of the disorder…Chelsea Ford, 27, is the only diagnosed case in Jersey but it is believed to affect about one person in every 5,000. “The fact it goes so undiagnosed, there could be people who do have it and don’t know what is wrong,” she said.

Donegal News: Letterkenny man shares story to mark Rare Disease Day

March 5, 2023

Donegal News (Ireland). Letterkenny man shares story to mark Rare Disease Day – “Letterkenny man Michael MacGinty, who suffers with a rare blood disease, has shared his story to mark Rare Disease Day. He highlighted the importance of having a conversation about rare diseases, which he says are not as rare as rare sounds.”