PH & HHT – Signs, Symptoms
& Disease Management (Recorded)
PH and HHT: Signs, Symptoms & Disease Management Join PHA and Cure HHT for the PHA Live webinar “PH and HHT: Signs, Symptoms and Disease Management” at 7:30 p.m. EDT,…
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Register Now! Patient & Physician Conference
Patient & Physician Conference Virtual | April 29 – May 7, 2022 The Cure HHT Academy is pleased to present its 1st Virtual Patient/Physician Conference this spring. The conference is…
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14th HHT Scientific Conference: Abstract Submission Deadline Extended!
The HHT International Scientific Conference is hosted and sponsored by Cure HHT. The Conference Organizing Committee invites authors to submit abstracts to be considered for inclusion in the 14th HHT International…
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Federal Funding Secured for U.S. Centers of Excellence
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
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
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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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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Meta: Accelerating Research on Rare Diseases
March 19, 2021 | Meta | By Jennifer L. Minnick “At a recent workshop about Meta, Executive Director of…
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Women in Science Day 2021 – International
“HHT Ireland reminds us that women and girls play a critical role in science and technology communities and that…
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