SURVEY: COVID-19 and Rare Disease Research
Cure HHT has partnered with Genetic Alliance and we need your help! Your voice is urgently needed in the fight to end COVID-19 through a 5-minute survey. You can fight this virus with…
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Managing Stress and Emotional Hurdles in HHT (recorded)
Dr. Abbey Hughes, board-certified rehabilitation psychologist and assistant professor in the Department of Physical Medicine and Rehabilitation at the Johns Hopkins University School of Medicine, discusses how to manage stress…
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Virtual Meet-Up: New Cure HHT Resource Library (recorded)
On May 20, 2020, Nicole Schaefer, Director of Medical and Scientific Programs and Phyllis Loveland, Operations and Communications Manager took a look into all that the new Cure HHT Resource…
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Virtual Meet-Up: COVID-19 “Mind Over Matter” (recorded)
On March 26, 2020, Sara Palmer, PhD, retired psychologist, Cure HHT President and author, along with Cure HHT Operations and Communications Manager Phyllis Loveland, addressed the stressors surrounding COVID-19, social…
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Announcement from Cure HHT Executive Director (COVID-19)
A Message from Cure HHT Executive Director, Marianne Clancy To our HHT Community: Two years ago, we coined the phrase #InThisTogether as part of our annual year-end appeal. Now more than…
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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.…
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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…
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Cure HHT’s 2024 Impact Report
2024: A Year of Significant Transformation and Progress Every year is a different chapter in our story – each…
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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…
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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…
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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.
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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.
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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.”
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