Once Upon A Gene

Por: Effie Parks

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

360 episodios disponibles

Latest episodes of the podcast Once Upon A Gene

Mostrando página 13 de 18

Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments 22/07/2021

A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff 15/07/2021

Effisode - Family Camp, Annoying Brothers, and the Doom of Packing 13/07/2021

Mental Health and living with chronic stress with Rare Disease Dad and Psychologist, Al Freedman, Ph.D 08/07/2021

Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle 01/07/2021

Effisode - Heatwaves and a Happy Birthday 29/06/2021

Living with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley 24/06/2021

A Rare Collection - Superheroes 17/06/2021

Effisode - Making Cents of it All 15/06/2021

Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig 10/06/2021

Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward 03/06/2021

Effisode - Putting the Play in Playground with DadVocate - Casey Parks 01/06/2021

Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O'Loughlin 27/05/2021

Advocates Come in Small Packages - My Life with Blau Syndrome with Keira Howell 20/05/2021

Effisode - Unexpected Moments in the Stairwell 18/05/2021

Rare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long 13/05/2021

Rare Disease Adoption with Josh and Monica Poynter 06/05/2021

Effisode - Empathy Puts Some Pep in Your Step 04/05/2021

Rare Disease and Grief - Its Ok That You're Not Ok with Megan Devine 29/04/2021

Creating Space for Mental Health for Men Living with Rare Diseases with David Ross 22/04/2021

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