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Curing for Generations

November 29, 2023

Curing for Generations is more than a campaign slogan, it is our commitment to the thousands of families affected by HHT and a promise to never give up!

For many, HHT has taken far too much – families whose photo albums include faces of loved ones lost, whose lives were cut short because of this disease – as well as pictures of those who don’t yet know the journey that lies ahead. But in those albums, there is also hope — like the sweet face of baby Rachel Erickson, whose life was saved by the quick intervention of Cure HHT and the skilled expertise of an HHT physician.

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PAZ Clinical Trial Now Recruiting

October 6, 2023

HHT Centers of Excellences across the U.S. are now enrolling patients to participate in the new randomized clinical trial to assess the effectiveness of Pazopanib in reducing the severity of nose bleeds in adults with HHT.

To learn more about the trial and to understand if participation may be right for you, please visit the clinical trials section of our website.

By participating in clinical research, you can play a role in helping the development of new treatments and therapeutics – which have the potential to lead to a higher quality of life for generations of HHT patients.

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A major milestone for HHT treatment!

September 26, 2023

I am reaching out to share the news of a truly momentous milestone for both our organization and our community; the Pazopanib clinical trial has officially launched!

This means Cure HHT is now one of the few patient advocacy organizations in the world that is directly sponsoring a Phase II/III clinical trial of an investigational drug product that we own. I wanted to explain what this means, reflect on how we reached this point, and share why this is so monumental!

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Angiogenesis Publishes 2022 Conference Summaries

September 22, 2023

The 14th HHT International Scientific Conference brought together 300 in-person attendees and 50 virtual viewers to present and discuss the most recent and impactful scientific and clinical advances in HHT.

The meeting had a record number of 209 original research abstracts submitted and the top scoring abstracts were selected for oral presentations. The Executive Summary and Abstract Summary published in Angiogenesis highlight the high-caliber HHT research presented in Portugal from trainees, scientists, and clinicians around the world.

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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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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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