Written by Rohan Narayanan on May 6, 2022
New council will help educate medical professionals, government agencies, legislators, and the public about rare diseases, research and treatment
May 6, 2022, Atlanta, GA – This week, Governor Brian Kemp signed legislation into law to establish a Rare Disease Advisory Council (RDAC) in Georgia. This advisory body will be comprised of… Read More
Written by Valaree DonFrancesco on April 20, 2022
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
Written by Valaree DonFrancesco on April 13, 2022
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
Written by Rohan Narayanan on April 4, 2022
Rare Disease Day Recap
Rare Disease Day took place on February, 28, 2022 and successfully raised awareness for the 7,000+ rare diseases that impact over 300 million people globally. NORD is proud to partner with EURORDIS (Rare Diseases – Europe) and others all around the world to drive an… Read More
Written by Valaree DonFrancesco on March 30, 2022
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