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June 22, 2022

TOPIC: NORDPod

Season Finale: The FDA’s Dr. Kathleen Donohue and RDCA- DAP

Posted at June 6, 2022 04:00 am by Valaree DonFrancesco

Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes Dr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA’s Office of New Drugs. Over 350 million people worldwide have a rare disease, yet only 10% of rare diseases have an FDA-approved… Read More

June 8, 2022

TOPIC: NORDPod

Living With Trichotillomania: Pageant Queen Sarah Pennington

Posted at June 6, 2022 04:00 am by Valaree DonFrancesco

You’re in for a treat on today’s episode of NORDpod as I welcome chronic illness advocate Sarah Pennington to the show. Since the age of 11, Sarah has been managing a condition known as Trichotillomania, a disorder that involves recurrent, irresistible urges to pull out body hair. An estimated 330,000 children… Read More

May 25, 2022

TOPIC: NORDPod

Paying It Forward: Young Adult Brain Cancer Survivor Rob Long

Posted at May 5, 2022 04:00 am by Valaree DonFrancesco

Rob Long is the Executive Director at Uplifting Athletes, a nonprofit organization that inspires the rare disease community with hope through the power of sport. In 1020, as a Pre-Season All-American playing for the Syracuse Orange Football team, he was contemplating which NFL team he wanted to be on. Until he… Read More

May 11, 2022

TOPIC: NORDPod

The Incredibly Talented Mr Bobby Foster

Posted at May 5, 2022 04:00 am by Valaree DonFrancesco

Bobby Foster is a content creator, a rapper/producer, a spoken word poet, and a certified life coach who was diagnosed with cystic fibrosis at birth. He graduated with a degree in creative writing from the University of Central Florida. Bobby is currently on a path to bring awareness and change through music. NORDpod is the official… Read More

April 30, 2020

TOPIC: NORDPod

Welcome to NORDpod (Teaser)

Posted at April 4, 2020 03:47 pm by Valaree DonFrancesco

Welcome to NORDpod™, the voice of rare disease and the official podcast of The National Organization of Rare Disorders (NORD®), a 501(c)(3) patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. We are one community, and, together, our voices are louder. Learn more about NORD at Read More