Effie Parks

Once Upon A Gene

Participe de uma conversa sincera que compartilha as experiências de famílias lidando com síndromes genéticas raras. Descubra histórias inspiradoras de resiliência e triunfo.

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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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Episódios recentes

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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