What the HHT?
A blog for the HHT community
Posts by Valaree Machen
New Evidence, Clearer Urgency: What the Latest HHT Study Shows
A major new study published in Blood shares early findings from CHORUS, the first national U.S. registry created to track the real-world impact of HHT. The report includes data from the first 600 participants enrolled across 15 HHT Centers of Excellence and confirms what patients and families have known for years: HHT is not just…
Read MoreAsk the Nurse: A Conversation on Pediatric HHT
Upcoming Webinar: Ask the Nurse: A Conversation on Pediatric HHT Fri., April 10 | 12:00-1:00 p.m. ET When it comes to HHT, early recognition can make all the difference. Yet too many children remain vulnerable to late or missed diagnosis. In this educational session, Lynne Sekarski, MSN, RN, CPN, will discuss how to recognize…
Read MoreDiscovering the HHT Genes: A Fireside Chat with Douglas Marchuk
Upcoming Webinar: Discovering the HHT Genes: A Fireside Chat with Douglas Marchuk Thurs., March 19th | 12:00-1:30 p.m. ET In this session we will discuss How were the 3 HHT genes identified? What functions do these genes encode? How do the mutations cause HHT? Finally, what does all this mean for the search for…
Read More16th HHT International Scientific Conference
Learn more curehht.org/scicon26
Read MoreNew Federal Momentum for HHT: $3M for Centers and Dedicated Research Eligibility
We are thrilled to share two major wins to celebrate today: the President has signed the FY26 funding agreement which includes $3,000,000 for HHT Treatment Centers and—huge for the research world—“Hereditary Hemorrhagic Telangiectasia (HHT)” is listed as its own eligible topic area under the Peer Reviewed Medical Research Program (PRMRP)! Next stop: the President’s signature…
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