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Announcements, Blog Posts, News Articles

FREE Genetic Testing for Rare Diseases

November 10, 2021

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!

November 10, 2021

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! 

October 20, 2021

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

August 6, 2021

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

June 30, 2021

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!

June 28, 2021

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.”

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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HHT Billboard

HHT Awareness in a BIG Way!

July 6, 2020

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

June 21, 2020

May 19, 2020 | Michigan Health | by Rene Wisely: “Nose bleeds are a less frequent tradition in the…

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Pournaras - Peterbourough Examiner

Canada Girl’s Rare Disease Inspires Her to Co-Author Book

June 1, 2020

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 11, 2020

March 9, 2020 | Stanford Medicine |by Tracie White  – “Jennifer Cook has dealt with migraine headaches and nosebleeds…

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