Latest News

Announcements, Blog Posts, News Articles

Cure HHT Participates in PHA’s Associated Conditions Summit

January 4, 2022

Individuals with HHT have a greater risk of developing pulmonary hypertension. Statistically, 15-20% of HHT patients have PH. In November 2021, Cure HHT participated in the The Pulmonary Hypertension Association…

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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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MacGinty, Michael - Irish Times

HHT in the News: “World Rare Diseases Day: Three people on how their unusual conditions affect their lives” (Article 3)

February 28, 2020

February 27, 20202 | Irish Times | by Sylvia Thompson – “Michael MacGinty from Letterkenny, Co Donegal, says that…

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Independent-IE-Ireland

HHT in the News: “I have the same rare disease that killed my brother”

February 25, 2020

February 24 2020 | Independent.ie   “As Rare Disease Day falls this Saturday, Katie Woods tells her story of living…

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Global Genes – Cure HHT’s Marianne Clancy Named “Rare Leader”

February 13, 2020

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HHT is Rare As One!

February 4, 2020

Cure HHT has been selected as 1 of only 30 organizations out of 287 that submitted letters of interest, to…

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Cleveland – “Woman Undergoes Brain Surgery to Remove Deadly AVM, Caused by Rare Genetic Condition”

December 9, 2019

Cleveland Clinic – “Every time Lindsay Vos got a throbbing headache, or felt weakness on the left side of…

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Scruggs-Kenosha News

HHT in the News – Wisconsin

November 18, 2019

KENOSHA — For most of his life, Mark Schnuck has had nosebleeds. Some have been minor, others severe, but…

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Rainbow Rehab’s Rainbow Visions Magazine: Coming Full Circle

April 17, 2019

Much of HHT education comes from the deeply personal stories of those who are living with the disorder. This…

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Washington Post Feature: Zina Martinez Story

November 20, 2018

The Washington Post | November 17, 2018 Check out the Washington Post Health & Science section’s featured article about…

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