Barrow Neurological Institute named new HHT Center of Excellence
Cure HHT recognizes centers equipped with the personnel, expertise, commitment, and resources to provide comprehensive evaluation, treatment, and education to individuals with HHT and their families. After 18 months of…
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Cure HHT Spring 2021 Newsletter: Now Available!
Scan the pages of our printed Spring newsletter, which hit mailboxes in early June, as a pdf or Flipbook.
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New HHT-HTC Treatment Centers
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…
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Spotlight on Rare Disease – HHT Featured on Biorasi Rare Disease Podcast
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…
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30 Years Strong Highlights
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…
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30th Anniversary Celebration
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,…
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Press Release: Vaderis Receives FDA Fast Track Designation for Treatment of HHT
The below press release was issued Monday, Nov. 18 by Vaderis Therapeutic, and is substantial news for our community. Cure HHT…
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A Monumental $128 Million Step Forward for HHT Research
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.
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BBC News: Jersey woman calls for more awareness of rare condition
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.
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Donegal News: Letterkenny man shares story to mark Rare Disease Day
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.”
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WMAR Baltimore: Musician with rare disease overcomes health scare
March 9, 2022 | WMAR Baltimore | By Abby Isaacs. Musician with rare disease overcomes health scare – “A rare…
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Business Insider: 39-year-old mother of three in the UK, suffered from daily nosebleeds
March 9, 2022 | Business Insider | By Lauren Crosby. After a lifetime of constant nosebleeds, a woman found…
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HHT on the TODAY Show: “Mommy I love you. My head hurts.”
Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT…
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WFMZ-TV 69 News reports on HHT-HTC Openings
There’s nothing we relish more than seeing news coverage about HHT. We were so excited to have WFMZ-TV Channel…
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