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Sep. 23, 2020


Telehealth: A Lifesaver For One Rare Disease Family

Posted by Valaree DonFrancesco

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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