What the HHT?
A blog for the HHT community
Front Page Announcements
New HHT Center Gives Hope to Father and Son with Rare Genetic Disease
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…”
Read MoreCure HHT Virtual Town Hall: “Meet the Board” (recorded)
Cure HHT Board of Directors Town Hall (Recording available through June 30, 2020) In honor of HHT Awareness month, we’d like you to meet six of our sixteen Board Members, including our Board President Sara Palmer, PhD, at Cure HHT’s 1st Town Hall Meeting on June 23rd — HHT Global Awareness Day! Our volunteer Board…
Read MoreCure HHT Official Health Updates: Coronavirus Disease (COVID-19)
CURE HHT OFFICIAL STATEMENT COVID-19 Traducción Española Update: June 11, 2020 | NORD ASSISTANCE PROGRAM & CENTERS OF EXCELLENCE (OPERATING STATUS) NORD ASSISTANCE PROGRAM For patients who have been directly impacted by the COVID-19 pandemic, the National Organization for Rare Disorders (NORD) is offering an Assistance Program designed to provide assistance to rare disease patients.…
Read MoreAsk the Doctor – HHT and PH (recorded)
Dr. Scott Olitsky, Cure HHT Chief Medical Officer, and Michael Knaapen, Director, Patient and Caregiver Programs at the Pulmonary Hypertension Association, discuss the dual diagnoses of Hereditary Hemorrhagic Telangiectasia (HHT) and Pulmonary Hypertension (PH). This dynamic duo take you through identifying the signs of PH, its relationship to HHT, diagnosis and treatment, and the resources…
Read MoreCanada Girl’s Rare Disease Inspires Her to Co-Author Book
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…”
Read More