Help KISS HHT goodbye!
February is Rare Disease Month and we want to SHOW OUR STRIPES in a big way! During our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day®), for each donation made…
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HHT Rare! Grab Your Swag
Pick up your HHT RARE swag today during Rare Disease Awareness Month in our online store, and start spreading HHT awareness while benefiting an amazing cause!
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Rare as One: Cure HHT receives CZI grant extension
We are thrilled to announce that our grant in the Chan Zuckerberg Initiative – Rare As One will be extended for another year! It’s hard to believe it has been…
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AnemoCheck Mobile App
AnemoCheck Mobile – the world’s first non-invasive, equipment-free smartphone app for noninvasive and instant hemoglobin level estimation is now available for Android and iOS. The app allows users to check…
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Cure HHT Participates in PHA’s Associated Conditions Summit
Individuals with HHT have a greater risk of developing pulmonary hypertension. Statistically, 15-20% of HHT patients have PH. In November 2021, Cure HHT participated in the The Pulmonary Hypertension Association…
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Shop for a cause. Shop for a cure. Shop Cure HHT!
Shopping for a cure has never been easier! Our new Cure HHT store, hosted by Shopify, provides so many great options for spreading awareness or gift giving – just in…
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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
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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