What the HHT?
A blog for the HHT community
My name is Hope and I’m 8 ½ years old. My sister has had nosebleeds ever since I can remember. Sometimes she has a nosebleed in the middle of playing. Blood can drip on our Legos and we have to stop. I feel really sad when Lily’s having her nosebleeds because I really like playing…Read More
I have had nosebleeds ever since I was 5 years old. These nosebleeds aren’t your normal nosebleeds – I get them every day, sometimes more than once a day. On January 31, 2020, I was diagnosed with a very rare genetic condition called Hereditary Hemorrhagic Telangiectasia (HHT for short). I had lots of tests to…Read More
Over the past few years, our HHT researchers have received significant funding for “Vascular Malformations,” a serious manifestation of HHT, through the Department of Defense’s (DoD) Peer Reviewed Medical Research Program (PRMRP). We recently learned that VM’s were inadvertently left OUT of the PRMRP for 2021. Your help is urgently needed in getting VM’s back…Read More
Magic in the Making – Finding a Cure for HHT Saturday, November 21st 7-9 p.m. (EST) Cure HHT proudly presents “Magic in the Making – Finding a Cure for HHT.” This magical night to support patients with HHT begins with an Amateur Hour of magic, joke-telling and fun featuring participants from our very own HHT…Read More
The HHT International Guidelines are used in HHT Centers of Excellence (CoE) worldwide for clinical decisions related to HHT diagnosis, screening, treatment and overall patient care management. These guidelines are used to set the standard of care to be used internationally for the diagnosis and treatment of HHT. Here you will find the most up-to-date…Read More