KISS HHT goodbye this February!
February is Rare Disease Month and once again, you can honor someone special to you who is affected by HHT, by participating in our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day®)!
For each donation made (no matter the amount), we’ll honor your loved ones who are either affected by HHT (patients, caregivers and HHT supporters) or who have sadly lost their battle to the disease, by collecting hearts and KISSES…
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Thank You for an Amazing Year
We want to extend a heartfelt thank you as we celebrate an amazing year of community and progress in 2022. Watch a year in review here.
If you’d like to learn more about the cutting edge developments happening in HHT science and research, click here.
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NEW! Text to Give
You can now support Cure HHT this holiday season via text! As an added bonus, when you make a donation through your mobile device, you can choose to receive future HHT news and updates directly to your phone. Message & data rates may apply. Donate today to have your gift DOUBLED by a generous group of donors. To give, text “donate” to (410) 237-0199.
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Giving Tuesday 2022
Giving Tuesday is the largest global day of generosity – where people around the world unite, encourage good, and support organizations that are near and dear to their hearts. It’s a meaningful day for us here at Cure HHT, as we couldn’t continue to push for progress without the generosity of our mighty and incredible community. You are the fuel that keeps us on the cutting edge of research and medicine! This #GivingTuesday, which is Tuesday, Nov. 29, we’ll be highlighting some of our standout young HHT scholars!
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2022 Newsletters now available online!
Scan the pages of our printed 2022 newsletters (spring, summer and fall) as a pdf or Flipbook. Catch up on recent scientific news, progress, leadership changes and more.
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14th HHT International Scientific Conference
On behalf of the Organizing Committee, we would like to invite you to join us in Estoril, Cascais, Portugal for the 14th HHT International Scientific Conference. We will host a Welcome Reception…
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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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