13 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

    • Mental Health
    • 5.0 • 29 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.

    Season Two PREMIERE with CEO Peter Saltonstall

    Season Two PREMIERE with CEO Peter Saltonstall

    It is Season Two of NORDPod, and we're kicking it off in style with a "Last Year Tonight"-themed episode with NORD's President and CEO, Peter Saltonstall, from his undisclosed bunker in New England. 2020 was not the best of times, but it was not the worst of times either, as you'll hear from our conversation for NORD. In today's episode, we'll be discussing: Revisiting NORDpod Season One, NORD's awarding $36M to patients through their assistance programs, their pivot to virtual programming pandemic response and COVID Relief Assistance Program, and what's in store for 2021. Enjoy the show. Learn more about NORD.

    • 30 min
    [BONUS] Opening Plenary: 2020 LRLS Patient and Family Forum

    [BONUS] Opening Plenary: 2020 LRLS Patient and Family Forum

    At NORDpod, we share our individual stories and experiences through bi-weekly conversations to celebrate (and sometimes commiserate) all the ways rare disease impacts our lives. This week’s episode is a supersized BONUS POD from the 2020 Living Rare Forum plenary session "Rare Storytelling Hour." The session was moderated by Lesli Nordstrom, NORD Director of Marketing and Communications and featured panelists Matthew Zachary and Andrew MacDowell of OffScrip Media, Mike Porath, CEO & Founder of The Mighty and Kam Redlawsk, a designer and patient advocate, Listen in as our special guests explore and share what it means to be storytellers. You can share YOUR own story with us by visiting: https://rarediseases.org/shareyourstory/

    • 1 hr 23 min
    Welcome to the NORD Rare Cancer Coalition

    Welcome to the NORD Rare Cancer Coalition

    On the show today, we’re talking all things rare cancer and highlighting the incredible impact that NORD’s Rare Cancer Coalition has made since it was founded — by our two guests: John Hopper President of the Board of the Fibrolamellar Cancer Foundation and Founding Chairman of the GI Cancer Alliance AND Jim Palma, Executive Director at the Target Cancer Foundation and Vice Chairman of the Board of Directors at NORD. There’s no profit I rare anything. Industry’s gotta recoup their costs by making it up in volume with all the big fancy cancers that get all the attention. Without entrepreneurial and philanthropic efforts by heroes like Jim and John, there would be no progress in the advocacy, research, and support resources for hundreds of thousands. So, to regroup, Why does NORD have a Rare Cancer Coalition? What does it do? Who are their members? How can you join? Is rare cancer considered a rare disease? All those questions and more on the program; because it’s not always about what we have, it’s about what we all have in common. Learn more about the NORD Rare Cancer Coalition here.

    • 32 min
    Prescription Drug Compliance, Adherence, and Robots, OH MY!

    Prescription Drug Compliance, Adherence, and Robots, OH MY!

    On the show today, Tom Rhoads, advocate, caregiver, and Founder and CEO at Spencer Health Solutions, whose mission is — if we may so paraphrase — make life easier for families and caregivers by simplifying the complex world of prescription medication adherence. Tom talks about how to make the patient experience better by taking into account that any diagnosis is a family affair, and there’s more to living with an illness than biology. What do we mean? Well, the stress, anxiety, uncertainty, and cacophony of our health system could use a little implication — and that’s precisely what we focus on. What is patient-friendly tech? Do we really want smart toothbrushes? Smart coffee pots? Perhaps? But what could really come in handy is when advocacy goes right, and smart devices collide to transform even a tiny chunk of healthcare by meeting patients and their families where they’re at and on their terms. Enjoy the show. Learn more at https://spencerhealthsolutions.com

    • 31 min
    Sarah Hill: A Young Life, Interrupted

    Sarah Hill: A Young Life, Interrupted

    Today’s show is all about one patient’s story navigating the world of rare disease, you know – the club you didn’t ask to join, but somehow, once you’re here, you’re kind of family? Sarah Hill had a life interrupted at a very young age. After being fabulously misdiagnosed and not taken seriously for years, at the age of 16, all of the dots finally connected, and it was correctly identified that she had Wolfram Syndrome. This one’s a heavy hitter, folks. Wolfram is a rare autosomal-recessive genetic disorder that causes childhood-onset diabetes insipidus, diabetes mellitus, optic atrophy, deafness, and various other possible disorders. Isn’t it hard enough to be “WELL” in your teens and twenties, let alone slapped with a life-changing health condition you didn’t ask for? Ladies and gentlemen — Sarah Hill.

    • 25 min
    More Telehealth with Pamela Gavin, Chief Strategy Officer at NORD

    More Telehealth with Pamela Gavin, Chief Strategy Officer at NORD

    On the show today: Pamela Gavin, Chief Strategy Officer at NORD. This episode is Part Three in — you guessed it — our three-part series on Telehealth… only this time around, it’s all about policy, advocacy, and how the only thing that has ever moved the needle to make life better for patients are patients like you. COVID has forever changed how we value Telehealth and telemedicine to complement the need and/or desire for in-person visits with doctors. And while there are still mass-market adoption challenges, will there be a snapback effect when the proverbial dust settles, and payers decide to rethink their benefits? Pam also talks about the role of everyday patients as citizen activists who, through the power of their own voice, can literally force payer adoption and reverse billing and pricing structures; because no one deserves to go broke b/c of a rare disease. Sounds wonky but – again – to reiterate that the only thing that has ever fostered the change we need are people like us. We can all learn how to advocate for our rare disease community, because, together, our voices are louder.

    • 24 min

Customer Reviews

5.0 out of 5
29 Ratings

29 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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