HHT in the News

2019 SciCon – Angiogenesis Publications

January 8, 2020

The executive summary and abstracts from the 2019 HHT International Scientific Conference, including details of the clinical and basic science, are now available online in Angiogenesis. As a valuable part of our mission to find a cure, we hope you find these research articles both informative and inspiring.

Cure HHT Support of Legislative Bill H.R.4144 – “Ending the Diagnostic Odyssey Act”

January 7, 2020

Cure HHT supports legislative bill H.R.4144 – “Ending the Diagnostic Odyssey Act.” “[N]early 80% of all rare diseases have a genetic cause, and half of rare disease cases impact children. The average diagnostic odyssey can last from anywhere from five to seven years. You can imagine the anguish of parents watching their children suffer, watching…

Research, Medical, Access and Awareness Initiatives Brochure

Cure HHT – 2019 Research, Medical Access and Awareness Initiatives Brochure

December 17, 2019

An overview of Cure HHT’s work, made possible by your support, in advancing diagnosis, treatment and research of HHT.

Seed Money

HHT Scientific Advancement Through Federal Grants

December 10, 2019

Learn more about the progress made by Feinstein Institute for Medical Research, federal grant recipients for HHT scientific research. The Department of Defense grant awarded to the Feinstein Institute was advocated for and leveraged by Cure HHT. Cure HHT community support and donations made this possible!

Medical News Today Image

HHT in the News – “What can cause a headache and a nosebleed?”

December 10, 2019

Medical News Today – “A small-scale study from 2014 looked at the association between migraine and nosebleeds in people with hereditary hemorrhagic telangiectasia (HHT). HHT is a rare genetic condition that causes blood vessels to develop abnormalities. People in the study often had nosebleeds and migraine episodes at the same time…”

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…

Washington Post Feature: Zina Martinez Story

November 20, 2018

The Washington Post | November 17, 2018 Check out the Washington Post Health & Science section’s featured article about a HHT diagnosis, written by Sandra G. Boodman. This harrowing tale is about a mother, her children, and the race to be properly diagnosed with HHT. Read full article >   Cure HHT was instrumental in…