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Patient & Physician Conference – Washington (Postponed)

March 5, 2020

Hyatt Regency – Bellevue, Washington **POSTPONED** Join us at our Patient & Physician conference in Washington for a unique education experience in the near future! This conference has been postponed from…

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Global Genes – Cure HHT’s Marianne Clancy Named “Rare Leader”

February 13, 2020

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Walk & Talk – Aurora, Colorado (POSTPONED)

February 6, 2020

Aurora, Colorado Our inaugural Cure HHT Walk & Talk Event in Aurora, Colorado has been postponed due to concerns related to COVID-19. Check back soon for updates on open registration.

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HHT is Rare As One!

February 4, 2020

Cure HHT has been selected as 1 of only 30 organizations out of 287 that submitted letters of interest, to participate in the Chan Zuckerberg Initiative’s (CZI) Rare As One Network,…

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Recorded WEBINAR: The Science Behind the 2019 Scientific Conference

February 2, 2020

Now available!

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2019 SciCon – Angiogenesis Publications

January 8, 2020

The executive summary and abstracts from the 2019 HHT International Scientific Conference, including details of the clinical and basic science, are now available online in Angiogenesis. As a valuable part…

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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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Meta: Accelerating Research on Rare Diseases

April 6, 2021

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

February 12, 2021

“HHT Ireland reminds us that women and girls play a critical role in science and technology communities and that…

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