HHT in the News: “I have the same rare disease that killed my brother”
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…”
HHT is Rare As One!
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”
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…”
HHT in the News – Wisconsin
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
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
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…
Chair’s Corner: UNC Department of Medicine Podcast with Dr. Raj Kasthuri about HHT
Podcast Series | The Department of Medicine at the University of North Carolina Check out the transcript of a podcast on June 27, 2018 and learn how Dr. Raj Kasthuri talks about Hereditary Hemorrhagic Telangiectasia, also known as HHT, with Dr. Ron Falk. Dr. Kasthuri describes the symptoms, how it can affect internal organs, and…
Living with HHT: Review in Journal of Radiology Nursing
Book Review | Journal of Radiology Nursing June 2018: Volume 37, Issue 2, Page 137. Read the article from the Journal of Radiology Nursing, written by Jeffrey Pollak, MD and Katharine Henderson, MS, reviewing the published book Sara Palmer, PhD titled Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia. Read Article | Purchase Book