MENGENAI EPISOD INI
We're overjoyed to welcome Daniel DeFabio to the studio this week. We speak about his son Lucas, who had Menkes Disease, and about the stages of grief, paying it forward, the work he's doing on Global Genes and the creating of The Disorder Channel.
Menkes Disease letters + numbers: ATP7A
globalgenes.org/
https://www.thedisordercollection.com/
Bahasa Inggeris
Amerika Syarikat
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EPISOD LAIN DALAM PODCAST INI
This week, Kim Bradley shares her journey being a rare disease mom. Her daughter Laelynn (which is means 'flower of hope'), has faced 100's of surgeries and continues to shine a light of love. We discuss everything from Laelynn's day-to-day care, parenting a big family, PCA (patient care assista ...
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We're honored to have Amy Butterworth in the studio this week to talk about her daughter Cindy Sue. It's a emotional ride and we're grateful for Amy's vulnerability and authenticity.
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Penafian: Podcast dan karya seni yang dibenamkan pada halaman ini adalah daripada Katelyn Nugent and Lindsay Weekes, yang merupakan hak milik pemiliknya dan tidak bergabung dengan atau disokong oleh Listen Notes, Inc.
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