Final Days to Register! Denver Regional Conference
HHT Patient & Physician Conference
Denver, Colorado | March 25, 2023
Don’t miss your chance to connect with the local HHT community just outside Denver, Colorado in Aurora, on March 25, 2023, for a day of networking and learning for both patients and physicians. Medical professionals can now receive CME credits for participation. This is an in-person conference. Registration is now open.
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Singapore General Hospital Certified as HHT International Treatment Center
Increasing access to specialized care is an important part of Cure HHT’s mission. We’ve made significant progress in the last 30+ years, but work remains to realize a future where every patient has access to expert care. This gap in care is particularly present for many in our international community, which is why we’re unveiling a new “International Treatment Center” program aimed at increasing the number of knowledgeable physicians and care teams around the globe…
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PATH Clinical Trial – Now Recruiting!
The PATH Study is exploring the use of an oral medication called pomalidomide for the treatment of nosebleeds in HHT at several research centers across the United States. Find centers and check your eligibility…
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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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Important FDA Update Regarding Iron Infusions
There’s been a change to the safety label for Injectafer®, an iron infusion often used to treat iron deficiency.…
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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
2024: A Year of Significant Transformation and Progress Every year is a different chapter in our story – each…
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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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