Latest News

Announcements, Blog Posts, News Articles

Beta Testers Needed for AnemoCheck Mobile App

January 28, 2021

Cure HHT and Sanguina have been working together to beta test a new smart phone app that will allow users to check their hemoglobin anytime with their smartphone. We previously…

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NEW Research Surveys Available!

January 28, 2021

The Cure HHT Research Network (“CHRN”) is an HHT patient-led research network that encourages the sharing of ideas among patients, scientists, and physicians. The CHRN aims to bring safe, effective…

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North American Standard of Care for the Screening of Brain & Lung VMs

January 14, 2021

There is always excitement associated with the publication of one of our important research studies as it provides significant information for patients and their providers in managing care. This study,…

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Virtual Meet-Up: HHT & COVID – 1 Year Later (Recorded)

January 13, 2021

Sat., January 16th 12:00 p.m. (EST) Don’t miss this rare opportunity to receive factual information surrounding COVID-19 and HHT from leading experts who have been on the frontlines since the…

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WEBINAR: Nociones básicas y generales sobre HHT (en español) (Recorded)

January 12, 2021

23 de Enero de 2021 12:30 p.m. (EST) El propósito de este primer webinar en español es brindar conocimientos generales sobre la HHT de manera comprensible y útil para pacientes,…

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“A Comprehensive Guide to Managing Your HHT” Publication – Now Available!

December 4, 2020

We’ve taken the Guidelines and distilled them into easily readable factsheets and checklists that can be filled out and given to your physicians. The result is a beautifully bound and…

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Meta: Accelerating Research on Rare Diseases

April 6, 2021

March 19, 2021 | Meta | By Jennifer L. Minnick “At a recent workshop about Meta, Executive Director of…

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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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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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