What the HHT?
A blog for the HHT community
Front Page Announcements
ACT NOW! HHT Federal Funding in Jeopardy!
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 MoreThe HHT Clinical Guidelines Are Here!
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 MorePATH – Now Recruiting!
The PATH Study is exploring the use of an oral medication called pomalidomide for the treatment of nosebleeds in HHT at 11 research centers across the United States. Find centers and check your eligibility.
Read MoreLindsay Vos Delivers Keynote Speech at the HFA Annual Symposium
Many of you may recognize Lindsay Vos’s name, and if you’ve ever had the opportunity to meet Lindsay or hear her speak, you’d undoubtedly have a hard time forgetting her infectious smile and positive attitude. After being diagnosed with HHT and undergoing a 14 hour surgery to remove a brain AVM in 2017, Lindsay has continued…
Read MoreAsk The Doctor: Tackling Anemia and Iron Deficiency (Recorded)
Feeling tired? Weak? Short of Breath? These symptoms could be related to HHT induced anemia and iron deficiency. With anemia affecting 50% of people diagnosed with HHT, and many not even aware that they have anemia. Watch our “Ask the Doctor” series with Dr. Scott Olitsky, Cure HHT Chief Medical Officer, as he addresses many…
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