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Cure HHT Announcements

Dr. Anthony Anzell Presented with $20,000 Research Grant

January 16, 2024

The University of Pittsburgh’s Dr. Anthony Anzell Presented with $20,000 Research Grant from Uplifting Athletes Dr. Anzell is among 10 rare disease researchers to be awarded a grant at Uplifting…

Cure HHT Canada now registered as a charitable organization in Canada

January 11, 2024

We are excited to announce the establishment of Cure HHT Canada as a registered, tax-deductible charitable organization in Canada! We heard your feedback on how important this designation is to you and we’ve worked diligently over the last two years to reach this milestone. The establishment of Cure HHT Canada marks a concentrated effort to expand and increase our support of our community in Canada!

E-News: Insider Connection

January 8, 2024

Check out our latest E-News! Delivered monthly, straight to your inbox – stay up to date on all things HHT including research, clinical trials, webinars, awareness, educational opportunities and more!…

Year End Appeal – Curing for Generations

December 12, 2023

Curing for Generations is more than a campaign slogan, it is our commitment to the thousands of families affected by HHT and a promise to never give up!

For many, HHT has taken far too much – families whose photo albums include faces of loved ones lost, whose lives were cut short because of this disease – as well as pictures of those who don’t yet know the journey that lies ahead. But in those albums, there is also hope — like the sweet face of baby Rachel Erickson, whose life was saved by the quick intervention of Cure HHT and the skilled expertise of an HHT physician.

2024 National HHT Patient & Physician Conference

November 28, 2023

Join us for the first National Patient & Physician Conference on the east coast in some time – patients and healthcare professionals alike won’t want to miss this opportunity!

We will we bring together the experts from 3 of our top centers – University of Pennsylvania/Children’s Hospital of Philadelphia, Johns Hopkins University and New York Presbyterian/Columbia University. Registration opens soon! Learn more >>

Help save lives this Giving Tuesday

November 23, 2023

Establishing new Centers of Excellence is essential to providing life-saving, expert HHT care to patients across the globe – including our littlest of patients like Jahier, Liam and Willie.

One of the many ways your donations will be put to use this Giving Tuesday is by helping to expand our pediatric reach – to certify more HHT Centers of Excellence with pediatric specialists – and grow the number of physicians educated about HHT. This is especially important for pediatric patients, where HHT can be more difficult to diagnose as symptoms do not often manifest until later in life. Early screening and expert treatment is vital to preventing complications and avoiding unneeded suffering and loss.

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.”