HHT in the News

Pournaras - Peterbourough Examiner

HHT in the News: “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

HHT is Rare As One!

February 4, 2020

Cure HHT has been selected as 1 of only 30 organizations out of 287 that submitted letters of interest, to participate in the Chan Zuckerberg Initiative’s (CZI) Rare As One Network, which will provide funding, tools, expansion support, and training to create a larger, more integrated HHT community! Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan…

Cleveland – “Woman Undergoes Brain Surgery to Remove Deadly AVM, Caused by Rare Genetic Condition”

December 9, 2019

Cleveland Clinic – “Every time Lindsay Vos got a throbbing headache, or felt weakness on the left side of her body, she wondered how much longer she would survive. Since 2011, during her senior year at the University of Toledo, the former basketball star…”

Scruggs-Kenosha News

HHT in the News – Wisconsin

November 18, 2019

KENOSHA — For most of his life, Mark Schnuck has had nosebleeds. Some have been minor, others severe, but they have just been something the Pleasant Prairie man says he has come to live with…

Rainbow Rehab’s Rainbow Visions Magazine: Coming Full Circle

April 17, 2019

Much of HHT education comes from the deeply personal stories of those who are living with the disorder. This incredible article by recreational therapist Lindsay Vos in Rainbow Rehab’s Rainbow Visions magazine is an intimate and honest portrayal of coming to terms with HHT. “Coming Full Circle” follows Lindsay’s journey through denial, HHT diagnosis, removal…