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Stanford HHT CoE Receives $2.8M Grant

September 22, 2023

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

August 21, 2023

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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E-News: Insider Connection

August 10, 2023

Check out our latest E-News! Delivered monthly, straight to your inbox – stay up to date on all things HHT including research, clinical trials, webinars, awareness, educational opportunities and more!…

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UAB named HHT Center of Excellence

July 12, 2023

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

June 12, 2023

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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BBC News: Jersey woman calls for more awareness of rare condition

April 13, 2023

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

March 5, 2023

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

May 20, 2022

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 22, 2022

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.”

November 9, 2021

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

August 11, 2021

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

April 6, 2021

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

February 12, 2021

“HHT Ireland reminds us that women and girls play a critical role in science and technology communities and that…

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