Cure HHT Research Network: Clinician and Scientist Surveys
The Cure HHT Research Network has put together surveys for our medical and basic science communities that will help us to identify research priorities in HHT. Launched in early 2020,…
Read MoreA WIN on Capitol Hill for HHT!
You may recall that back in November 2020, Cure HHT reached out for help to urge the Senate to correct an oversight related to the Department of Defense’s (DoD) Peer Reviewed…
Read MoreBeta Testers Needed for AnemoCheck Mobile App
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…
Read MoreNEW Research Surveys Available!
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…
Read MoreNorth American Standard of Care for the Screening of Brain & Lung VMs
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,…
Read MoreVirtual Meet-Up: HHT & COVID – 1 Year Later (Recorded)
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…
Read MoreBBC News: Jersey woman calls for more awareness of rare condition
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.
Read MoreDonegal News: Letterkenny man shares story to mark Rare Disease Day
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.”
Read MoreWMAR Baltimore: Musician with rare disease overcomes health scare
March 9, 2022 | WMAR Baltimore | By Abby Isaacs. Musician with rare disease overcomes health scare – “A rare…
Read MoreBusiness Insider: 39-year-old mother of three in the UK, suffered from daily nosebleeds
March 9, 2022 | Business Insider | By Lauren Crosby. After a lifetime of constant nosebleeds, a woman found…
Read MoreHHT on the TODAY Show: “Mommy I love you. My head hurts.”
Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT…
Read MoreWFMZ-TV 69 News reports on HHT-HTC Openings
There’s nothing we relish more than seeing news coverage about HHT. We were so excited to have WFMZ-TV Channel…
Read MoreMeta: Accelerating Research on Rare Diseases
March 19, 2021 | Meta | By Jennifer L. Minnick “At a recent workshop about Meta, Executive Director of…
Read MoreWomen in Science Day 2021 – International
“HHT Ireland reminds us that women and girls play a critical role in science and technology communities and that…
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