Today on NORDpod, Matthew Zachary welcomes Phillip Bright, a senior at The University of Kentucky diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT) at a very young age and has lived an accelerated life facing this rare condition. HHT is a congenital dominant hereditary… Read More
Dr. Adrienne Hammill is Research Director of the Hemangioma & Vascular Malformation Program and Director of the HHT Center of Excellence at Cincinnati Children’s Hospital. Her path to becoming a physician started when she was eight years old when she read an article about retinoblastoma, which… Read More
Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of those affected. Kari began… Read More
Chris Anselmo is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease he never thought he’d get. After a car crash found him in the hospital on the receiving end of a random diagnosis of… Read More
Cleveland, OH, March 15, 2022—Today, the National Organization for Rare Disorders (NORD®) announced the 2022 Rare Impact Award honorees. This… Read More
