Skip to content

What the HHT?

A blog for the HHT community

Access to expert care at CHOP saved Jahier’s life

January 21, 2023 started off like a normal day for 13-year-old Jahier and his mom, Amber. The two had just gone out to eat and did a little shopping afterwards. When they arrived home, Jahier helped carry a few bags inside when suddenly he started to cry. “It wasn’t a normal cry,” Amber recalled. “He started saying he couldn’t feel his legs and said his head was hurting.”

Amber didn’t wait. She rushed him to the local emergency room, which was just a 5-minute drive down the road. By the time they arrived, Jahier couldn’t walk. The team of doctors called for a stroke alert and conducted a brain CT. The first scan looked normal, but Jahier’s condition continued to worsen. A second scan, this time with contrast, revealed a ruptured brain AVM — and the bleed appeared to be spreading.

Read More

Creating hope on Giving Tuesday for our littlest of patients

As a little boy, Liam seemed to feel sick very frequently – far more than his two older brothers.  He’d have a harder time recovering from illness, being sluggish, tired and missing many days from school. Mary, Liam’s mother’s concern started to grow as the pediatrician visits got more and more frequent. For years, she was told the same things – it’s probably allergies, or just a viral infection. But those answers weren’t good enough for Mary. She took him to gastroenterologists, immunologists, requested blood work and more, searching for answers. It would take nearly a decade to finally get an answer, when Liam was 14.

Read More

15th HHT International Scientific Conference

The 15th HHT International Scientific Conference will take place in Mandelieu-la-Napoule, France from October 15-19, 2024. Connect with researchers unraveling the mysteries of HHT mechanisms of disease and discovering potential therapies for patients around the world. Check back soon for open registration, poster submissions and more!

Read More

Suffer from brain AVMs? You can help further HHT research today

Cure HHT, along with HHT Centers of Excellence across North America, are now actively recruiting HHT patients worldwide to participate in the NIH funded study, entitled “Cerebral Hemorrhage Risk in Hereditary Hemorrhagic Telangiectasia (HHT)”. The goal of this research is to determine what genetic and clinical factors signal high risk for hemorrhage from brain AVMs.…

Read More

PAZ Clinical Trial Now Recruiting

HHT Centers of Excellences across the U.S. are now enrolling patients to participate in the new randomized clinical trial to assess the effectiveness of Pazopanib in reducing the severity of nose bleeds in adults with HHT.

To learn more about the trial and to understand if participation may be right for you, please visit the clinical trials section of our website.

By participating in clinical research, you can play a role in helping the development of new treatments and therapeutics – which have the potential to lead to a higher quality of life for generations of HHT patients.

Read More
Scroll To Top