39 episodes

Welcome to RARING, the voice of the rare disease community and a no-BS forum for patients and their families, rare disease patient organizations, and medical professionals. If you live with a rare disease or love someone who does, RARING is the podcast for you, by you, and with you every day. Tune in to hear leading experts discussing next-generation diagnostics and treatments. Learn from passionate nonprofit leaders talking about their highs and lows fighting for their communities. And laugh and cry as real patients and caregivers like you share authentic and inspirational stories about their challenges and struggles to busy living. RARING: Because together, our voices are louder.

RARING OffScrip Health

    • Health & Fitness
    • 5.0 • 40 Ratings

Welcome to RARING, the voice of the rare disease community and a no-BS forum for patients and their families, rare disease patient organizations, and medical professionals. If you live with a rare disease or love someone who does, RARING is the podcast for you, by you, and with you every day. Tune in to hear leading experts discussing next-generation diagnostics and treatments. Learn from passionate nonprofit leaders talking about their highs and lows fighting for their communities. And laugh and cry as real patients and caregivers like you share authentic and inspirational stories about their challenges and struggles to busy living. RARING: Because together, our voices are louder.

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

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

    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 treatment. Dr. Donohue oversees the national hub designed to move the needle on that statistic, providing a shared pool of resources to spark new discoveries and speed up the creation of new therapies for rare diseases. Listen for the subtle sounds of the wild thunderstorm that rolls in during their taping as they talk through the critical role patient advocacy groups play in bringing rare disease patients into making these discoveries happen. Learn about the RDCA-DAP: the all-important central repository of shared data about rare diseases, with a very alphabet-soupy name. They also cover the powerful need for advocacy groups to ensure the data they collect from patients is gathered in a way that makes it possible for them to submit it to RDCA- DAP. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, email nordpod@rarediseases.org and visit https://rarediseases.org. RDCA-DAP® is fully funded with a federal grant awarded to the Critical Path Institute: www.c-path.org/fda-acknowledgement. https://c-path.org/fda-acknowledgement.

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

    • 26 min
    Living With Trichotillomania: Pageant Queen Sarah Pennington

    Living With Trichotillomania: Pageant Queen Sarah Pennington

    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 in the US alone may face Trichotillomania in their early tween/teenage years, a time in your life that may be challenging enough on its own. Sarah decided to do something by taking ownership of her condition, and, after many years of depression and suicidal thoughts, coupled with months in a residential treatment program. The moment she decided to take off her wig instantly transformed her into a vessel for purpose and impact. And so, she has taken on a new challenge: beauty pageants. So prepare yourself for a profoundly inspiring conversation about perseverance, motivation, and how to pay it forward. Enjoy the show.




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

    • 34 min
    Paying It Forward: Young Adult Brain Cancer Survivor Rob Long

    Paying It Forward: Young Adult Brain Cancer Survivor Rob Long

    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 was diagnosed out of the blue with a Grade III Anaplastic Astrocytoma, a rare form of pediatric brain cancer. Eleven years later, he's paying it forward, raising money and awareness for needed rare disease research. He joined Matthew Zachary for a candid conversation about the terrible privilege of surviving cancer, and, as a fellow SUNY Alum, they heavily bond over their mutual love of Wegmans. 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.

    • 31 min
    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

Customer Reviews

5.0 out of 5
40 Ratings

40 Ratings

lKaup ,

Wonderful podcast.

I wish I would have found this podcast sooner. Having a rare disease myself, It has been so encouraging to hear others stories who are living with a rare disease. I would highly recommend this podcast.

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.

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