1st CHRN Conference Convening
The 1st Cure HHT Research Network International Convening is just around the corner and taking place in Boston from March 18-20! Our HHT patient advocates, leading physicians and scientists from around the globe have…
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FB Live Event: Dr. Scott Olitsky – Are Clinical Trials Right for Me?
Join Cure HHT Chief Medical Officer, Scott Olitsky, MD for a Facebook live event as he discuss the components of a typical clinical trial, why they are necessary, and how…
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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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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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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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