Latest News

Announcements, Blog Posts, News Articles

Cure HHT is excited to announce that the HHT-HTC Treatment Centers, part of Michigan Medicine Hemophilia and Coagulation Disorders Program, as well as the Indiana Hemophilia & Thrombosis Center, Hemophilia…

Spotlight on Rare Disease – HHT Featured on Biorasi Rare Disease Podcast

June 16, 2021

Check out the sneak preview of Episode 4 of Few & Far Between, Biorasi’s rare disease podcast, featuring Marianne Clancy – Executive Director at Cure HHT. Listen to the full…

30 Years Strong Highlights

June 8, 2021

With your support, Cure HHT has accomplished so much, and the best is yet to come! As we launch our 30th Anniversary Year, we look back at just a few…

30th Anniversary Celebration

June 2, 2021

Cure HHT’s 30th Anniversary kick-off is a virtual celebration was a huge success, with with presenters reflecting on the tremendous influence of the organization’s vision and future endeavors to find,…

Friends Virtual Trivia

March 29, 2021

Do the names Monica, Chandler, Ross, Rachel, Joey and Phoebe ring a bell? Then don’t miss Charm City’s “Friends” themed Trivia Night. Charm City is hosting their weekly Sunday Trivia…

Let’s Play! Virtual Trivia

March 9, 2021

Calling all Masters of Random Facts, Extraordinary Guessers, Jeopardy Aficionados and Trivial Pursuit Junkies— this is the event for you! Join Cure HHT and Charm City Trivia on Thursday, March…

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.”