HHT in the News

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 Cure HHT Marianne Clancy noticed a new scientific paper about the rare disease she’s focused on curing — in the form of a case report from Sudan. Hereditary Hemorrhagic Telangiectasia, or HHT, is a genetic disorder that causes…

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 their participation should be strengthened.” HHT Ireland talks to Petronella McLoughlin, an HHT patient who is a Senior Finite Scheduler with MSD Biotech, Dublin. McLoughlin notes: “It is exciting to be among those who influence therapeutical…

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! Our “More Than Just a Nosebleed” billboard was perched on Route 50 in Maryland, the most traveled highway to all the Maryland beaches where approximately 30,000 cars passed this sign every single day. Can you imagine…

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 Gutowski family now as a team of doctors work together to treat their abnormal blood vessels caused by hereditary hemorrhagic telangiectasia…”

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 thinking about going home, but Eleni Zoe Pournaras spent her time in the Hospital for Sick Children putting the finishing touches on a book she co-authored and illustrated…”

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 since she was in junior high school, but it wasn’t until much later in life, after two small strokes in her 40s, that she discovered these seemingly disconnected ailments — including strange, little red dots on…

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 watching family members having serious unexplained nose bleeds has been part of his life for as long as he can remember. “My earliest memories are of my grandmother constantly clutching a handkerchief that was blood-stained. My…

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 with HHT – a genetic blood vessel disorder…”

Global Genes – Cure HHT’s Marianne Clancy Named “Rare Leader”

February 13, 2020