What the HHT?
A blog for the HHT community
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 More
March 9, 2022 | Business Insider | By Lauren Crosby. After a lifetime of constant nosebleeds, a woman found out she had a rare genetic disease – “Kate James, a 39-year-old mother of three in the UK, suffered from daily nosebleeds throughout most of her life until she was given a diagnosis she never expected.…Read More
Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT Center of Excellence. Her life changed in an instant when she was rushed to the emergency room. The last thing she said to her mother before her life completely changed was, “Mommy I love you. My…Read More
There’s nothing we relish more than seeing news coverage about HHT. We were so excited to have WFMZ-TV Channel 69 report on our two newest HHT-HTC Treatment Centers that opened in Indiana and Michigan! Not only did the reporting share the good news about access to care but gave an overview of HHT and its…Read More
March 19, 2021 | Meta | By Jennifer L. Minnick “At a recent workshop about Meta, Executive Director of Cure HHT Marianne Clancy noticed a new scientific paper about the rare disease she’s focused on curing — in the form of a case report from Sudan. Hereditary Hemorrhagic Telangiectasia, or HHT, is a genetic disorder that causes…Read More