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 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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