What the HHT?
A blog for the HHT community
Front Page Announcements
HHT Education at the National Hemophilia Foundation Annual Conference
This August, Dr. Raj Kasthuri, our HHT Center of Excellence Director from the University of North Carolina Chapel Hill, gave an exceptional HHT presentation (the most attended presentation of the day) at this week’s National Hemophilia Foundation’s Bleeding Disorder Conference: Future Therapies and Surveillance for Blood Disorders. With this year’s conference fully virtual, Dr. Kasthuri…
Read MoreHHT Awareness in a BIG Way!
This June Awareness Month, Cure HHT was able to spread awareness in a huge way with a 24-foot-wide billboard! Our “More Than Just a Nosebleed” billboard was perched on Route 50 in Maryland, the most traveled highway to all the Maryland beaches where approximately 30,000 cars passed this sign every single day. Can you imagine…
Read MoreNew 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 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