RARING

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

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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.

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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.

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On the show today: Crisis Management OR how to pivot with as much style and grace as possible when all plans go out the window. Joining us is Debbie Drell, Director of Membership here at NORD and Mary McGowen, Executive Director of the Myositis Association, whose mission is to improve the lives of persons affected by myositis, fund innovative research, and increase myositis awareness and advocacy. How do leaders connect with their communities, partners, donors, and stakeholders when potentially scrambling to survive? Many small nonprofits are already doing what I call the “Doggie Paddle Therapy” just to keep the lights on every day. And yet there are incredibly positive outcomes that stem from uncertainty when you have the right circle of friends, a network of advisors, and a supportive coalition that’s got your back. Let’s learn how to lean into the pain, adapt on the fly, distill what is most critical and stay just as passionate and focused as we want and need to be — because tremendous opportunities lie inside unexpected challenges. 

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On this extra special BONUS EPISODE of NORDpod, it’s our very own Lesli Nordstrom, Director of Marketing and Communications! AND... In an epic role reversal, she dropped by OffScrip Media Studios in downtown Manhattan for a LIVE in-person interview with Matthew Zachary and OffScrip Media co-founder and COO Andrew McDowell. Yes, we took all the precautions. Yes, we socially distanced ourselves at the studio table. Yes, we may have been wearing tin foil hats. And yes, it was amazing to have actual human contact with another person who is not part of my family. So prepare ye for a fun, unfiltered, and down-to-earth chat amongst friends about passion, vision, purpose, community, and why we do what we do to make dents in the universe that matter. Enjoy the show.

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On today's show, our time's enduring topic — No, not COVID, but it does make a distinct and necessary cameo on the show — No, we’re talking about Telehealth. Telemedicine. Tele–all the things. Perhaps even the telephone when required. Joining us are Dr. Natasha Shur, Medical Geneticist, and Monisha Kisling, a genetic counselor both from Children's National in Washington DC. Telehealth has been around for a long time, but its adoption akin to no one trusting eBay and Amazon in the 1990s with the safety and security of using your credit cards online. My oh my how times have changed. And the same is true for what we discuss in this episode. Has COVID created a forced adoption? Yes. Are more people realizing how nice it is — when relevant — to NOT have to sit in a waiting room for hours? Yes. Is Telehealth perfect and here to stay? Well, it may not be perfect — perhaps a work in progress that shows real signs of being a real option — but, yes, Telehealth is here to stay.

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On today's show, host Matthew Zachary welcome parents Alice Alpert and Edgar Wonzica to share their story of entering the rare disease community by way of their beautiful son Leo being born with Treacher Collins syndrome, a very rare genetic disorder with fewer than 20,000 US cases per year. Edgar, a practicing psychiatrist with a background in climate science, and his wife Alice, a foreign affairs officer for the US Department of State, with a background in paleoceanography, found themselves navigating a foreign land but found support and community from the rare disease community. —— With an added boost from the modern-day benefits that Telehealth can bring. This episode is a truly inspiring story of love and hope when sometimes all you need to hear is, "Your baby is going to be just fine." Enjoy the show.

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On today's show, the man, the myth, the legend, Mike Porath, Founder and CEO at The Mighty and member of the Board of Directors at NORD. For those unaware, The Mighty is the world's largest digital health community online at TheMighty.com and via a free mobile app for iOS and Android. 3MM members can't be wrong, and I can attest that this. We talk about his family's personal experience with rare disease, working for ABC and AOL before the Internet was a thing — and what it's like to look in your rearview mirror and realize you created the thing you only wished you had that is now helping millions of people every day. Download The Mighty mobile app for iOS and Android or join online at TheMighty.com

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What a great way to kick off the NORDpod series, because on today’s show host Matthew Zachary will be speaking with the man, the myth, the legend Peter Saltonstall, President and Chief Executive Officer of NORD. Peter’s been at the helm of NORD since 2008 and has a storied 30-year history of leadership for the private sector and the nonprofit community. And he’s grown NORD into the powerhouse of influence and impact that it is today. We had a great conversation, and I hope you enjoy it. And maybe you’ll learn something. Who knows? Enjoy the show.

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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 http://RareDiseases.org

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