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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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Singapore General Hospital Certified as HHT International Treatment Center

March 8, 2023

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!

February 28, 2023

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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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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