20 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 Media

    • Health & Fitness
    • 5.0 • 32 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.

    Fifteen Months Later...

    Fifteen Months Later...

    Today on NORDpod, we welcome back Lesli Nordstrom, Director of Marketing and communications at NORD. As returning champion to the show, she’s back to get real about the rare disease community with reflection on the past 18 months. The pandemic’s impact cannot be understated. Millions of lives have been uprooted as we mourn the deaths of hundreds of thousands. But our shared pain and suffering are what make us stronger together. Lesli and Matthew also discuss the unique challenges facing the nonprofit sector and the medical profession in the wake of life being turned upside down. They acknowledge NORD’s role in confronting the crisis head-on by implementing new support programs, financial aid systems, and incubation grants to startup charities in the space.

    • 38 min
    Rare Voices of NORD: Jo-Ann D'Angelo

    Rare Voices of NORD: Jo-Ann D'Angelo

    On the show today, Matthew Zachary welcomes Jo-Ann D'Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is an extremely rare facial disfigurement that impacts the bone, muscle, and dental only on one side of the face. There is no cure, and the only treatment is invasive plastic surgery that only impacts the appearance and doesn't address any underlying conditions. Jo-Ann is an extraordinary human being who very bravely shares her remarkable story with us today. She is currently going through the "NORD RareLaunch: Forming a Foundation" program which is helping to incubate and accelerate her nonprofit ambitions. She is a consummate example of how one person can make a difference for so many others. Enjoy the show.

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    • 25 min
    Jeff Goldstein and NORD's RareLaunch Research Ready

    Jeff Goldstein and NORD's RareLaunch Research Ready

    On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and raises money for lung transplant research. Jeff was diagnosed in his mid-40s in peak health with Idiopathic Pulmonary Fibrosis — lots of syllables with a very bleak outlook. Eighteen years later, he's still here to talk about not just his incredible story but the extraordinary partnership he's struck with NORD's RareLaunch Research Ready program to kick off their first patient registry for this truly under-voiced community.

    Follow us on social @NORDpodcast

    • 29 min
    Adolescent and Young Adult Rare Disease: Seth Rotberg's Story

    Adolescent and Young Adult Rare Disease: Seth Rotberg's Story

    On the show today, we are talking all things adolescent and young adult (AYA) rare disease. Back when I was CEO at Stupid Cancer, we’d always say that AYA cancer was not better or worse, just different. And the same holds true for this community. Joining me is Seth Rotberg, a very vocal leader in the AYA rare disease community and the Founder of Our Odyssey. Seth lost his mother to Huntington’s Disease several years after she was initially diagnosed while he was in High School. He also tested positive for the disease along the way, bringing challenges and opportunities to the life in front of him. His mission is to provide support and resources to the AYA rare disease community to help them reach their full potential. Enjoy the show.

    Follow us on social @NORDpodcast

    • 31 min
    Rare Disease Research: What's All This Then?

    Rare Disease Research: What's All This Then?

    On the show today: Vanessa Boulanger is Director of Research at NORD and heads up — you guessed it — NORD’s research department. What kind of research, you ask? Well, I’m glad you asked. We’ll be discussing NORD’s I AM RARE platform, a patient registry that, with the rare disease community’s help, allows for a better understanding of rare diseases, how to manage them, improve treatments, and generally make life better for so many. All this and more. Enjoy the show.

    Follow us on social @NORDpodcast

    • 27 min
    Ungeeking The Speak: Dr Rachel Bailey Talks "Gene Therapy 101"

    Ungeeking The Speak: Dr Rachel Bailey Talks "Gene Therapy 101"

    Dr. Rachel Bailey joins me today on the program. She is an Assistant Professor of the Center for Alzheimer's and Neurodegenerative Diseases and Pediatrics at UT Southwestern Medical Center. Today's episode is all about those two magic words, no not "COVID Vaccine — those indeed are magic words — no, I'm referring to "Gene Therapy." Yes, Rachel and I are here to give our version of "Gene Therapy 101" Growing up with a younger sibling with cerebral palsy set Rachel off in the direction she took borne of that condition, which explains her passion for science. I asked her how we can "ungeek" the speak, explain complex information to average humans, leverage empathy to improve relationships between doctors and patients, and how optimistic we should all be about the future of medicine. Alright - Let's get to it.

    Follow us on social @NORDpodcast

    • 35 min

Customer Reviews

5.0 out of 5
32 Ratings

32 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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