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Research, Medical, Access and Awareness Initiatives Brochure

Cure HHT – 2019 Research, Medical Access and Awareness Initiatives Brochure

December 17, 2019

An overview of Cure HHT’s work, made possible by your support, in advancing diagnosis, treatment and research of HHT.

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Seed Money

HHT Scientific Advancement Through Federal Grants

December 10, 2019

Learn more about the progress made by Feinstein Institute for Medical Research, federal grant recipients for HHT scientific research. The Department of Defense grant awarded to the Feinstein Institute was…

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Scruggs-Kenosha News

HHT in the News – Wisconsin

November 18, 2019

KENOSHA — For most of his life, Mark Schnuck has had nosebleeds. Some have been minor, others severe, but they have just been something the Pleasant Prairie man says he…

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Clinical Guidelines Image

The Clinical Guidelines Conference

November 9, 2019

 

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2019 Scientific Conference Recap

August 26, 2019

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Test your HHT knowledge with the HHT Quiz!

June 25, 2019

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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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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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