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Federal Funding Secured for U.S. Centers of Excellence

April 8, 2022

A message from Cure HHT Executive Director, Marianne Clancy It is with tearful joyfulness that I share this truly momentous news with you: Our HHT Center of Excellence (CoE) funding…

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Cure HHT Scientific Newsletter

March 26, 2022

Twice a year, Cure HHT collaborates with its global research and medical advisory board to publish HHT Frontlines – a scientific newsletter aimed at centralizing, summarizing, and sharing the most…

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CHRN: Creating a Roadmap for the Future

March 25, 2022

A Message from Marianne Clancy, Cure HHT Executive Director Transformational. That’s the word that keeps coming to mind since returning from Boston, the site of the 1st Cure HHT Research…

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1st CHRN Conference Convening

March 16, 2022

The 1st Cure HHT Research Network International Convening is just around the corner and taking place in Boston from March 18-20! Our HHT patient advocates, leading physicians and scientists from around the globe have…

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FB Live Event: Dr. Scott Olitsky – Are Clinical Trials Right for Me?

February 14, 2022

Join Cure HHT Chief Medical Officer, Scott Olitsky, MD for a Facebook live event as he discuss the components of a typical clinical trial, why they are necessary, and how…

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Help KISS HHT goodbye!

February 11, 2022

February is Rare Disease Month and we want to SHOW OUR STRIPES in a big way! During our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day®), for each donation made…

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Press Release: Vaderis Receives FDA Fast Track Designation for Treatment of HHT

November 18, 2024

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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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.

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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.”

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WMAR Baltimore: Musician with rare disease overcomes health scare

May 20, 2022

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 22, 2022

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.”

November 9, 2021

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

August 11, 2021

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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