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HHT Global Awareness Day

June 20, 2024

Global HHT Awareness Day is just a few days away. Did you know, this date wasn’t chosen at random? It honors the life of Grace Nolan, who sadly passed away at the young age of 9 from complications of HHT. Since then, her family has championed for HHT awareness and research. This year marks the 25th anniversary of Grace’s tragic passing. The Grace Nolan Foundation has generously agreed to match the first $25,000 we raise on June 23rd! Your gift will be DOUBLED!

Visit our HHT Changemakers page today to hear Grace’s story, learn how you can get involved this June and to donate. Learn more >>

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June Awareness – Be an HHT Changemaker!

June 1, 2024

June marks one of the most important months in the calendar year for those who suffer from HHT, as it’s National HHT Awareness Month. This year we are focusing on “HHT Changemakers” – celebrating the incredible strength, resilience, and commitment of our mighty community in our fight against HHT.

You don’t have to be a researcher or physician or scientists to be a Changemakers – Changemakers are individuals just like all of you! Patients, caregivers, supporters and friends who tirelessly advocate for greater awareness, better treatment, and – one day – a cure. Your passion and dedication inspire us every day, and together, we can achieve remarkable things. When we come together as a community to fight for the change we want to see, we are all changemakers. Learn the many ways you can become an HHT Changemaker today! Learn more >>


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HHT Continuing Education Program for medical professionals

March 22, 2024

We are excited to announce the launch of the HHT Continuing Education Hub, an online platform through which providers of all specialties can take courses on various HHT topics!

Many medical providers are required to earn a certain amount of credits per year. Now, providers seeking to further their HHT knowledge can receive continuing education credits (CE or CME) when they complete our courses.

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Cure HHT Takes on Capitol Hill

March 16, 2024

This month, our group of Cure HHT staff, patient advocates, physicians and researchers descended upon Capitol Hill with the mission of shedding light on the importance of protecting and expanding federal funding for HHT. In all, we had 35 appointments with congressional and senatorial office members and staff – including a meeting with Senator Susan Collins. Our advocacy efforts wrapped up with a Congressional Briefing from inside the Capitol Building, where we presented on the impact federal funding can have in changing the trajectory of this disease.

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

February 25, 2020

February 24 2020 |   “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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