Effie Parks

Once Upon A Gene

希少遺伝子症候群に取り組む家族の経験を共有する心温まる会話に参加してください。レジリエンスと勝利の感動的な物語を発見しましょう。

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Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples

40 mins • Jan 9, 2025

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最近のエピソード

Jan 9, 2025

Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples

40 mins

Jan 2, 2025

Eight Years of Searching: A Determined Family’s Quest to Cure an Ultra-Rare CLCN6 Mutation with Kristin & Paul Purdy

32 mins

Dec 19, 2024

Chasing Glimmers - From Grief to Glitter: Parenting Through Infantile MLD and Embracing Life’s Full Spectrum - with Megan Gillet

36 mins

Dec 12, 2024

The Gift of Grace: A Holiday Heart-to-Heart for Caregivers

11 mins

Nov 27, 2024

Grateful Reflections for Epilepsy Awareness Month: Parents Share Love, Lessons, and Insights from the Dravet Syndrome Community

E249 • 157 mins

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