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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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BBC News: Jersey woman calls for more awareness of rare condition

April 13, 2023

BBC Jersey (UK) Jersey woman calls for more awareness of rare condition – “A Jersey woman who has a rare genetic condition that affects her blood vessels is calling for greater awareness of the disorder…Chelsea Ford, 27, is the only diagnosed case in Jersey but it is believed to affect about one person in every 5,000. “The fact it goes so undiagnosed, there could be people who do have it and don’t know what is wrong,” she said.

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Donegal News: Letterkenny man shares story to mark Rare Disease Day

March 5, 2023

Donegal News (Ireland). Letterkenny man shares story to mark Rare Disease Day – “Letterkenny man Michael MacGinty, who suffers with a rare blood disease, has shared his story to mark Rare Disease Day. He highlighted the importance of having a conversation about rare diseases, which he says are not as rare as rare sounds.”

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WMAR Baltimore: Musician with rare disease overcomes health scare

May 20, 2022

March 9, 2022 | WMAR Baltimore | By Abby Isaacs. Musician with rare disease overcomes health scare – “A rare…

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Business Insider: 39-year-old mother of three in the UK, suffered from daily nosebleeds

March 22, 2022

March 9, 2022 | Business Insider | By Lauren Crosby.  After a lifetime of constant nosebleeds, a woman found…

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HHT on the TODAY Show: “Mommy I love you. My head hurts.”

November 9, 2021

Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT…

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WFMZ-TV 69 News reports on HHT-HTC Openings

August 11, 2021

There’s nothing we relish more than seeing news coverage about HHT. We were so excited to have WFMZ-TV Channel…

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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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