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.
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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