April 20, 2022
TOPIC: NORDPod
Posted at April 4, 2022 04:00 am by Valaree DonFrancesco
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 disorder in which some blood vessels do not develop… Read More
Tags: rare disease community, Rare Disease Day, NORD, Rare Diseases, rare disease, Peter Saltonstall, rare cancers, rare cancer, National Organization for Rare Disorders, Mike Porath, The Mighty, telemedicine, Living Rare, rare cancer day, rare cancer coalition, covid-19, telehealth, stupid cancer, matthew zachary, stupid cancer show, voice of rare disease, living strong, community, digital health, NORDpod
April 13, 2022
TOPIC: NORDPod
Posted at April 4, 2022 04:00 am by Valaree DonFrancesco
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 is cancer with a genetic cause. She decided then… Read More
Tags: rare disease community, Rare Disease Day, NORD, Rare Diseases, rare disease, Peter Saltonstall, rare cancers, rare cancer, National Organization for Rare Disorders, Mike Porath, The Mighty, telemedicine, Living Rare, rare cancer day, rare cancer coalition, covid-19, telehealth, stupid cancer, matthew zachary, stupid cancer show, voice of rare disease, living strong, community, digital health, NORDpod
March 30, 2022
TOPIC: NORDPod
Posted at March 3, 2022 05:00 am by Valaree DonFrancesco
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 her life as a Theater nerd and started her… Read More
Tags: rare disease community, Rare Disease Day, NORD, Rare Diseases, rare disease, Peter Saltonstall, rare cancers, rare cancer, National Organization for Rare Disorders, Mike Porath, The Mighty, telemedicine, Living Rare, rare cancer day, rare cancer coalition, covid-19, telehealth, stupid cancer, matthew zachary, stupid cancer show, voice of rare disease, living strong, community, digital health, NORDpod, Kari Luther Rosbeck, tuberous sclerosis complex
March 16, 2022
TOPIC: NORDPod
Posted at March 3, 2022 05:00 am by Valaree DonFrancesco
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 having extremely high creatine kinase levels, he was soon… Read More
Tags: rare disease community, Rare Disease Day, NORD, Rare Diseases, rare disease, Peter Saltonstall, rare cancers, rare cancer, National Organization for Rare Disorders, Mike Porath, The Mighty, telemedicine, Living Rare, rare cancer day, rare cancer coalition, covid-19, telehealth, stupid cancer, matthew zachary, stupid cancer show, voice of rare disease, living strong, community, digital health, NORDpod, Muscular Dystrophy, chris anselmo
February 25, 2022
TOPIC: NORDPod
Posted at February 2, 2022 08:14 pm by Valaree DonFrancesco
Welcome to Season Four of NORDpod, the voice of rare disease. Kicking off 2022, and in recognition of Rare Disease Day, we are proud to welcome actor and social media influencer Adam Rose. Adam has amassed a considerable fan base by creating relatable, entertaining, and insightful video segments on TikTok, often… Read More
Tags: rare disease community, Rare Disease Day, NORD, Rare Diseases, rare disease, Peter Saltonstall, rare cancers, rare cancer, National Organization for Rare Disorders, Mike Porath, The Mighty, telemedicine, Living Rare, rare cancer day, rare cancer coalition, covid-19, telehealth, stupid cancer, matthew zachary, stupid cancer show, voice of rare disease, living strong, community, digital health, NORDpod, Adam Rose, rare disease day 2022
