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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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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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Chair’s Corner: UNC Department of Medicine Podcast with Dr. Raj Kasthuri about HHT

June 29, 2018

Podcast Series | The Department of Medicine at the University of North Carolina Check out the transcript of a…

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Living with HHT: Review in Journal of Radiology Nursing

June 21, 2018

Book Review | Journal of Radiology Nursing June 2018: Volume 37, Issue 2, Page 137. Read the article from…

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Marianne Clancy Interview on Fox 45 News Baltimore

June 21, 2018

Fox 45 News Baltimore | June 18, 2018 Check out the news clip from the interview between Fox 45…

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