What the HHT?
A blog for the HHT community
We’ve taken the Guidelines and distilled them into easily readable factsheets and checklists that can be filled out and given to your physicians. The result is a beautifully bound and curated 48-page publication, A Comprehensive Guide to Managing Your HHT. We are extremely proud to be able to provide this booklet to our HHT community.…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
CURE HHT OFFICIAL STATEMENT COVID-19 Traducción Española Update: November 24, 2020 | COVID-19 RARE DISEASE RESEARCH Rare disease patients and caregivers: How are you being impacted by the novel coronavirus pandemic? Please complete a 20-minute online research survey from home to share your experiences. This study is being conducted by National Institutes of Health (NIH)’s…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