Patient & Physician Conference – Washington (Postponed)
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…
Read More
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 More
HHT 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 More
2019 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 More
Important FDA Update Regarding Iron Infusions
There’s been a change to the safety label for Injectafer®, an iron infusion often used to treat iron deficiency.…
Read More
Volunteers Needed! Join Cure HHT on Capitol Hill
We are calling upon volunteers to Join us in Washington, DC, for HHT Hill Day and be the voice…
Read More
Cure HHT’s 2024 Impact Report
2024: A Year of Significant Transformation and Progress Every year is a different chapter in our story – each…
Read More
Press 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 More
Press 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 More
A Monumental $128 Million Step Forward for HHT Research
Today is a monumental day for HHT. The new biotechnology company, Diagonal Therapeutics, officially launched and we wanted to share more about why this is news you simply can’t miss!
In short, Diagonal’s lead program is focused on developing an innovative treatment not just to alleviate the symptoms of HHT – but using antibodies to reverse the formation of vascular malformations altogether. That’s right, there is now a biotechnology company, backed by $128 million in Series A financing, focused entirely on a curative HHT therapy.
For months, Cure HHT has been collaborating with Diagonal’s management team to help make this day a reality. We have connected them to leading HHT scientists to help them further develop their program, and have spent countless hours meeting with venture capital firms to educate them on the burden of this disease and help Diagonal secure funding to launch.
Read More
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.
Read More
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.”
Read More