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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…

Talk Circle: Living With HHT Virtual Book Club Event

February 9, 2021

Talk Circle: Living With HHT Virtual Book Club Event Wed., February 24th | 7:00 p.m. (EST) (Final Night of the Winter Series) It’s the three year anniversary of the publication…

Cure HHT Research Network: Clinician and Scientist Surveys

January 29, 2021

The Cure HHT Research Network has put together surveys for our medical and basic science communities that will help us to identify research priorities in HHT. Launched in early 2020,…

A WIN on Capitol Hill for HHT!

January 28, 2021

You may recall that back in November 2020, Cure HHT reached out for help to urge the Senate to correct an oversight related to the Department of Defense’s (DoD) Peer Reviewed…

Beta Testers Needed for AnemoCheck Mobile App

January 28, 2021

Cure HHT and Sanguina have been working together to beta test a new smart phone app that will allow users to check their hemoglobin anytime with their smartphone. We previously…

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

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.”