Latest News

Announcements, Blog Posts, News Articles

14th HHT International Scientific Conference

July 20, 2022

On behalf of the Organizing Committee, we would like to invite you to join us in Estoril, Cascais, Portugal for the 14th HHT International Scientific Conference. We will host a Welcome Reception…

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UF Health named HHT Center of Excellence

June 28, 2022

Cure HHT is excited to announce that UF Health has been named the first HHT Center of Excellence in Florida and the 31st CoE in North America. Cure HHT recognizes…

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June Awareness Month

June 24, 2022

HHT Awareness Month is here, and we are expanding our reach on a world-wide level as we launch our #LetTheWorldHearUs campaign.

The world is all around…waiting to hear your voice. Sharing your HHT experiences—the good and the bad—can make all the difference. By joining us this Awareness month, together we can reach the ears of the health care industry, legislative decision-makers, and the global population to bring awareness forth about a disease that impacts 1 in 5000 people worldwide. With 90% of HHT patients still undiagnosed, HHT has gone unheard for far too long. We need to change that once and for all!

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HHT Global Awareness Day

June 23, 2022

HHT Global Awareness Day (June 23rd) Get loud and #LetTheWorldHearUs In recognition of awareness day, we’re giving a 10% discount on all items purchased from our store on June 23rd!…

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E-News: Insider Connection

June 8, 2022

Check out our latest E-News! Delivered monthly, straight to your inbox – stay up to date on all things HHT including research, clinical trials, webinars, awareness, educational opportunities and more!…

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Strides for Strength

May 28, 2022

Join members of the HHT community around the world for our 3rd annual global virtual walk for a cure! We are excited to officially kick off registration for our 3rd annual Strides for…

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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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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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