Stanford HHT CoE Receives $2.8M Grant
Over the years and thanks to the support of our community, we’ve been able to grow the number of clinicians and researchers focusing on advancing our understanding and treatment of HHT.
We’re excited to announce another major step forward in that fight! Dr. Edda Spiekerkoetter and her scientific colleagues at the Stanford HHT Center of Excellence were recently awarded a $2.8 million (yes, you read that right!) NIH/ NHLBI grant focused on the understanding and targeting of molecular and cellular events responsible for the development, growth, and regression of pulmonary AVMs.
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UMH Certified as HHT Center of Excellence
UHealth – University of Miami Health System has been officially certified as an HHT Center of Excellence. This marks another significant step forward in our fight to increase access to specialized care for our community! By earning this designation, UHealth, part of the University of Miami Miller School of Medicine, joins our growing network of more than 30 Centers of Excellence across North America.
Miami is currently accepting new patients and welcomes inquiries from patients across South Florida, the Caribbean and Latin America. The team includes many Spanish-speaking experts!
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UAB named HHT Center of Excellence
Cure HHT is excited to announce that The University of Alabama at Birmingham (UAB) is now certified as an HHT Center of Excellence — providing expert, comprehensive care for HHT patients. UAB is currently accepting new patients, and welcomes your inquiries!
Under the guidance of co-Directors Drs. Jesse Jones and Theresa Caridi, the specialties that support care through the UAB COE include ENT, cardiology, gastrointestinal/ hepatology, genetics, interventional radiology, neuroradiology, neurosurgery, and pulmonology.
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Root for Awareness – Crowdfunding Campaign
This year, in place of our virtual walk – Strides for Strength – we thought we’d change things up and branch out (pun intended) as we spotlight the importance of understanding your family’s HHT roots. Your stories of both struggle and triumph help people take notice! Fighting for awareness and making HHT more recognizable, however, does come at a cost. But hey, nobody said we couldn’t have a little fun while we do it! Rally your family and friends to help share your story, raise money for an amazing cause, and compete to WIN AMAZING PRIZES along the way!
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Seattle National Conference
HHT Patient & Physician Conference
Seattle, Washington | June 3-4, 2023
Register today to join us for our National Patient & Physician Conference on June 3-4, in Bellevue, Washington just outside of Seattle. Medical professionals can now receive CME credits for participation. This is an in-person conference. Registration is now open.
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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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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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