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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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Recorded WEBINAR: Living With HHT

January 4, 2020

Now available!

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Cure HHT’s 2024 Impact Report

December 16, 2024

A Year Of Significant Transformation & Progress Every year is a different chapter in our story – each bringing…

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Press Release: Diagonal Therapeutics to Present Data at ASH 2024 Demonstrating the Economic and Clinical Burden of HHT

December 3, 2024

Diagonal Therapeutics — who has raised $128 million in Series A funding to support their sole project, a curative…

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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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