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Announcements, Blog Posts, News Articles

Fall Into Fitness

November 1, 2020

Fall Into Fitness November 22, 2020 | 9:30 a.m. (EST) Join Eve Bondareva for a 45-minute virtual total body burn workout to benefit Cure HHT. Eve has worked in the…

11th Annual Stoner Open

October 19, 2020

11th Annual Stoner Open October 22, 2020 | 1:30 p.m. (EST) Farmstead Golf & Country Club Spend the day on the green to support Cure HHT! Join Steve Stoner and…

Lindsay Vos Delivers Keynote Speech at the HFA Annual Symposium

September 16, 2020

Many of you may recognize Lindsay Vos’s name, and if you’ve ever had the opportunity to meet Lindsay or hear her speak, you’d undoubtedly have a hard time forgetting her infectious…

HHT Education at the National Hemophilia Foundation Annual Conference

August 16, 2020

This August, Dr. Raj Kasthuri, our HHT Center of Excellence Director from the University of North Carolina Chapel Hill, gave an exceptional HHT presentation (the most attended presentation of the…

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.”