Walk & Talk – Aurora, Colorado (POSTPONED)
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.
Read MoreHHT is Rare As One!
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,…
Read More2019 SciCon – Angiogenesis Publications
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…
Read MoreCure HHT’s 2024 Impact Report
A Year Of Significant Transformation & Progress Every year is a different chapter in our story – each bringing…
Read MorePress Release: Diagonal Therapeutics to Present Data at ASH 2024 Demonstrating the Economic and Clinical Burden of HHT
Diagonal Therapeutics — who has raised $128 million in Series A funding to support their sole project, a curative…
Read MorePress Release: Vaderis Receives FDA Fast Track Designation for Treatment of HHT
The below press release was issued Monday, Nov. 18 by Vaderis Therapeutic, and is substantial news for our community. Cure HHT…
Read MoreBBC 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.
Read MoreDonegal 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.”
Read MoreWMAR 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…
Read MoreBusiness 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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