HHT in the News


‘I have the same rare disease that killed my brother’ – by Woods, Katie

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…

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.

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…