Latest News

Announcements, Blog Posts, News Articles

ACT NOW! HHT Federal Funding in Jeopardy!

November 24, 2020

Over the past few years, our HHT researchers have received significant funding for “Vascular Malformations,” a serious manifestation of HHT, through the Department of Defense’s (DoD) Peer Reviewed Medical Research…

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Magic in the Making: Finding a Cure for HHT

November 2, 2020

Magic in the Making – Finding a Cure for HHT Saturday, November 21st 7-9 p.m. (EST) Cure HHT proudly presents “Magic in the Making – Finding a Cure for HHT.”…

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The HHT Clinical Guidelines Are Here!

November 1, 2020

The HHT International Guidelines are used in HHT Centers of Excellence (CoE) worldwide for clinical decisions related to HHT diagnosis, screening, treatment and overall patient care management. These guidelines are…

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Fall Into Fitness

November 1, 2020

Fall Into Fitness November 22, 2020 | 9:30 a.m. (EST) Join Eve Bondareva for a 45-minute virtual total body burn workout to benefit Cure HHT. Eve has worked in the…

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11th Annual Stoner Open

October 19, 2020

11th Annual Stoner Open October 22, 2020 | 1:30 p.m. (EST) Farmstead Golf & Country Club Spend the day on the green to support Cure HHT! Join Steve Stoner and…

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Lindsay Vos Delivers Keynote Speech at the HFA Annual Symposium

September 16, 2020

Many of you may recognize Lindsay Vos’s name, and if you’ve ever had the opportunity to meet Lindsay or hear her speak, you’d undoubtedly have a hard time forgetting her infectious…

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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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