36 episodes

Welcome to NORDpod™, the voice of rare disease and the official podcast of the National Organization for Rare Disorders (NORD®). We are one community dedicated to those impacted by rare disease, and, together, our voices are louder.

NORDpod OffScrip Health

    • Health & Fitness
    • 4.9 • 38 Ratings

Welcome to NORDpod™, the voice of rare disease and the official podcast of the National Organization for Rare Disorders (NORD®). We are one community dedicated to those impacted by rare disease, and, together, our voices are louder.

    The Incredibly Talented Mr Bobby Foster

    The Incredibly Talented Mr Bobby Foster

    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 podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.

    See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

    • 38 min
    The Patient Experience: Philip Bright

    The Patient Experience: Philip Bright

    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 properly. Phil subsequently lived with a small pulmonary arteriovenous malformation in my lung. As a rare disease patient, he decided to give back to the community and pursue a career in medicine. As of this taping, Phil was recently accepted to Medical School and is looking ahead to a lifetime of critical clinical research to improve the lives of patients like him. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, email nordpod@rarediseases.org and visit https://rarediseases.org.

    See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

    • 26 min
    One Piece Of The Puzzle: Dr. Adrienne Hammill

    One Piece Of The Puzzle: Dr. Adrienne Hammill

    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 that she wanted to cure cancer. She joins Matthew Zachary to discuss a rare condition known as Hereditary Hemorrhagic Telangiectasia (HHT) and the differences in pediatric and adult care with specific regard to screenings and early detection. NORDpod is the official podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.

    See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

    • 30 min
    From Pain To Purpose: Kari Luther Rosbeck

    From Pain To Purpose: Kari Luther Rosbeck

    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 own company in NYC after graduating from SUNY Albany. Tragedy struck when she lost her newborn to SIDS. Today she leads an incredible team and fights for equity and quality of life of tens of thousands of patients impacted by this rare genetic condition. Aside from nerding out on all things Sondheim, she and host Matthew Zachary also dive into the "How a bill becomes a law" process of drug development. There's nothing quite like getting a drug approved that you know will actually make a dent in the universe for thousands of people. Enjoy the show.

    NORDpod is the official podcast of The National Organization for Rare Disorders. For more information visit https://rarediseases.org.




    See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

    • 33 min
    Chris Anselmo: The Accidental Muscular Dystrophy Advocate

    Chris Anselmo: The Accidental Muscular Dystrophy Advocate

    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 after diagnosed with Dysferlinopathy, specifically, Limb-Girdle muscular dystrophy, a rare muscle-weakening disease. No one asks to get sick but he went beast mode as a prolific blogger sharing his story and documenting the very real issues he had facing isolation, depression, anxiety, and a desire to make a difference for others like him.

    NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.

    See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

    • 28 min
    Rare Disease Day 2022 with actor Adam Rose

    Rare Disease Day 2022 with actor Adam Rose

    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 sporting a blue cardigan. He is also a rare disease patient, advocate, and activist sharing his story about living with Gaucher’s Disease.

    Rare Disease Day is committed to raising awareness for the community. This annual commemoration is focused on the theme of health equity. Part of health care inequity involves a lack of access to an accurate and timely diagnosis, treatment, and information about your disease. By raising awareness and showing your stripes, you can help improve the visibility of rare diseases.

    NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.

    See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

    • 34 min

Customer Reviews

4.9 out of 5
38 Ratings

38 Ratings

DebbieDoesDC ,

So inspiring and informative

Matthew Zachary is HILARIOUS — how does he tackle such heavy topics so gracefully and adding a spark of joy and fun? It’s magic!

I feel warm and fuzzy after listening to each podcast — the voices and perspectives shared are SO INSPIRING.

I never miss an episode. This is one of my top 3 podcasts. THANK YOU NORD!!

narcolepsygirl ,

Excellent

NORD is THE most helpful organization out there for resources for people with rare diseases. I’m thrilled about this podcast.

Ndcn126 ,

Nancy

Great episode today!! Really enjoyed listening to it!! Looking forward to the next one!!

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