What the HHT?
A blog for the HHT community
Front Page Announcements
Spreading Awareness 1 Mile at a Time
“What is HHT?” It’s a question Marijo McCune gets asked often, and it’s exactly what she hoped to accomplish when she made the decision to create the license plate that reads, ‘CURE HHT.’ “Though I may never know how many people have asked Google [What is HHT], I’m sure there’s been many. They say curiosity…
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PH & HHT – Signs, Symptoms
& Disease Management (Recorded)
PH and HHT: Signs, Symptoms & Disease Management Join PHA and Cure HHT for the PHA Live webinar “PH and HHT: Signs, Symptoms and Disease Management” at 7:30 p.m. EDT, Wednesday, June 22. Murali M. Chakinala, M.D. will discuss the importance of recognizing the signs and symptoms of Pulmonary Hypertension (PH) and Hereditary Hemorrhagic Telangiectasia…
Read MoreWMAR Baltimore: Musician with rare disease overcomes health scare
March 9, 2022 | WMAR Baltimore | By Abby Isaacs. Musician with rare disease overcomes health scare – “A rare disease turned a Maryland man’s life upside down and it all started with one symptom. Now that he has a treatment plan that works, he’s sharing his story, hoping it helps others to get diagnosed early.”…
Read More13th Annual Stoner Open
13th Annual Stoner Open July 8, 2022 | 1:30 p.m. (EST) Farmstead Golf & Country Club Spend the day on the green to support Cure HHT! Join Steve Stoner and friends at the Farmstead Golf & Country Club in Lafayette, NJ for the 13th year in a row to support an important cause. Let’s make…
Read MoreFederal Funding Secured for U.S. Centers of Excellence
A message from Cure HHT Executive Director, Marianne Clancy It is with tearful joyfulness that I share this truly momentous news with you: Our HHT Center of Excellence (CoE) funding request made it into the final spending bill, and that bill was signed into law by President Biden just a few weeks ago. At long…
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