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E-News: Insider Connection

April 10, 2023

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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Singapore General Hospital Certified as HHT International Treatment Center

March 8, 2023

Increasing access to specialized care is an important part of Cure HHT’s mission. We’ve made significant progress in the last 30+ years, but work remains to realize a future where every patient has access to expert care. This gap in care is particularly present for many in our international community, which is why we’re unveiling a new “International Treatment Center” program aimed at increasing the number of knowledgeable physicians and care teams around the globe…

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PATH_Logo

PATH Clinical Trial – Now Recruiting!

February 28, 2023

The PATH Study is exploring the use of an oral medication called pomalidomide for the treatment of nosebleeds in HHT at several research centers across the United States. Find centers and check your eligibility…

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KISS HHT goodbye this February!

February 14, 2023

February is Rare Disease Month and once again, you can honor someone special to you who is affected by HHT, by participating in our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day®)!

For each donation made (no matter the amount), we’ll honor your loved ones who are either affected by HHT (patients, caregivers and HHT supporters) or who have sadly lost their battle to the disease, by collecting hearts and KISSES…

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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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