2024 National HHT Patient & Physician Conference
Join us for the first National Patient & Physician Conference on the east coast in some time – patients and healthcare professionals alike won’t want to miss this opportunity!
We will we bring together the experts from 3 of our top centers – University of Pennsylvania/Children’s Hospital of Philadelphia, Johns Hopkins University and New York Presbyterian/Columbia University. Registration opens soon! Learn more >>
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Help save lives this Giving Tuesday
Establishing new Centers of Excellence is essential to providing life-saving, expert HHT care to patients across the globe – including our littlest of patients like Jahier, Liam and Willie.
One of the many ways your donations will be put to use this Giving Tuesday is by helping to expand our pediatric reach – to certify more HHT Centers of Excellence with pediatric specialists – and grow the number of physicians educated about HHT. This is especially important for pediatric patients, where HHT can be more difficult to diagnose as symptoms do not often manifest until later in life. Early screening and expert treatment is vital to preventing complications and avoiding unneeded suffering and loss.
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Suffer from brain AVMs? You can help further HHT research today
Cure HHT, along with HHT Centers of Excellence across North America, are now actively recruiting HHT patients worldwide to participate in the NIH funded study, entitled “Cerebral Hemorrhage Risk in…
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PAZ Clinical Trial Now Recruiting
HHT Centers of Excellences across the U.S. are now enrolling patients to participate in the new randomized clinical trial to assess the effectiveness of Pazopanib in reducing the severity of nose bleeds in adults with HHT.
To learn more about the trial and to understand if participation may be right for you, please visit the clinical trials section of our website.
By participating in clinical research, you can play a role in helping the development of new treatments and therapeutics – which have the potential to lead to a higher quality of life for generations of HHT patients.
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A major milestone for HHT treatment!
I am reaching out to share the news of a truly momentous milestone for both our organization and our community; the Pazopanib clinical trial has officially launched!
This means Cure HHT is now one of the few patient advocacy organizations in the world that is directly sponsoring a Phase II/III clinical trial of an investigational drug product that we own. I wanted to explain what this means, reflect on how we reached this point, and share why this is so monumental!
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Angiogenesis Publishes 2022 Conference Summaries
The 14th HHT International Scientific Conference brought together 300 in-person attendees and 50 virtual viewers to present and discuss the most recent and impactful scientific and clinical advances in HHT.
The meeting had a record number of 209 original research abstracts submitted and the top scoring abstracts were selected for oral presentations. The Executive Summary and Abstract Summary published in Angiogenesis highlight the high-caliber HHT research presented in Portugal from trainees, scientists, and clinicians around the world.
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Cure HHT’s 2024 Impact Report
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
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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WMAR 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…
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Business 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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