Cure HHT Leads Global Breakthrough in Bleeding Standards, Paving the Way for Future HHT Therapies
International Consensus Report Published in the American Journal of Hematology Aims to Transform HHT Research, Treatment, and Clinical Trials
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A Major Step Forward for HHT Treatment: Promising Preclinical Data from Diagonal Therapeutics
We’re excited to share two important updates from our partners at Diagonal Therapeutics. At this week’s European Hematology Association (EHA) Congress, Diagonal Therapeutics presented promising preclinical data demonstrating the potential of their…
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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 that drives change! Your presence can help make a powerful impact…
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HHT Global Awareness Day
Global HHT Awareness Day is just a few days away. Did you know, this date wasn’t chosen at random? It honors the life of Grace Nolan, who sadly passed away at the young age of 9 from complications of HHT. Since then, her family has championed for HHT awareness and research. This year marks the 25th anniversary of Grace’s tragic passing. The Grace Nolan Foundation has generously agreed to match the first $25,000 we raise on June 23rd! Your gift will be DOUBLED!
Visit our HHT Changemakers page today to hear Grace’s story, learn how you can get involved this June and to donate. Learn more >>
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June Awareness – Be an HHT Changemaker!
June marks one of the most important months in the calendar year for those who suffer from HHT, as it’s National HHT Awareness Month. This year we are focusing on “HHT Changemakers” – celebrating the incredible strength, resilience, and commitment of our mighty community in our fight against HHT.
You don’t have to be a researcher or physician or scientists to be a Changemakers – Changemakers are individuals just like all of you! Patients, caregivers, supporters and friends who tirelessly advocate for greater awareness, better treatment, and – one day – a cure. Your passion and dedication inspire us every day, and together, we can achieve remarkable things. When we come together as a community to fight for the change we want to see, we are all changemakers. Learn the many ways you can become an HHT Changemaker today! Learn more >>
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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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HHT on the TODAY Show: “Mommy I love you. My head hurts.”
Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT…
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WFMZ-TV 69 News reports on HHT-HTC Openings
There’s nothing we relish more than seeing news coverage about HHT. We were so excited to have WFMZ-TV Channel…
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Meta: Accelerating Research on Rare Diseases
March 19, 2021 | Meta | By Jennifer L. Minnick “At a recent workshop about Meta, Executive Director of…
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Women in Science Day 2021 – International
“HHT Ireland reminds us that women and girls play a critical role in science and technology communities and that…
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