FREE Genetic Testing for Rare Diseases
The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected rare disease who do not have a genetic…
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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 up to 11 research centers across the United States.…
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Shop for a cause. Shop for a cure. Shop Cure HHT!
Shopping for a cure has never been easier! Our new Cure HHT store, hosted by Shopify, provides so many great options for spreading awareness or gift giving – just in…
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CDC Features HHT in Popular Webinar Series
One of the biggest challenges facing HHT patients continues to be the lack of HHT knowledge amongst healthcare providers not affiliated with an HHT Center of Excellence. We understand how…
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Barrow Neurological Institute named new HHT Center of Excellence
Cure HHT recognizes centers equipped with the personnel, expertise, commitment, and resources to provide comprehensive evaluation, treatment, and education to individuals with HHT and their families. After 18 months of…
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Cure HHT Spring 2021 Newsletter: Now Available!
Scan the pages of our printed Spring newsletter, which hit mailboxes in early June, as a pdf or Flipbook.
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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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Women in Science Day 2021 – International
“HHT Ireland reminds us that women and girls play a critical role in science and technology communities and that…
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HHT Awareness in a BIG Way!
This June Awareness Month, Cure HHT was able to spread awareness in a huge way with a 24-foot-wide billboard!…
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New HHT Center Gives Hope to Father and Son with Rare Genetic Disease
May 19, 2020 | Michigan Health | by Rene Wisely: “Nose bleeds are a less frequent tradition in the…
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Canada Girl’s Rare Disease Inspires Her to Co-Author Book
May 31, 2020 | The Peterbourough Examiner | By Omar Mosleh: “Most kids in the hospital spend their time…
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Stanford News Center: Patient Spotlight – Jennifer Cook and Nina Murphy-Cook
March 9, 2020 | Stanford Medicine |by Tracie White – “Jennifer Cook has dealt with migraine headaches and nosebleeds…
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