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Once Upon A Gene

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 17 de 18

Rare Like Us with Taylor Kane 09/07/2020
Founder of LakiKid - Sensory Tools for Home and Classroom with Jason Hsieh 02/07/2020
Anna Laurent on Alagille Syndrome and Her Road to Advocacy 25/06/2020
Sage Graves - Estate Planning, Guardianship, Special Needs Trusts 18/06/2020
The Ladies Behind the Edits 11/06/2020
Loving Large: A Mother's Rare Disease Memoir With Patti Hall 08/06/2020
In Loving Memory of Lucas DeFabio 07/06/2020
Beyond Quarantine: Acceptance, Empathy, and a Better Normal 28/05/2020
Quarantine - What We're Missing, What We're Not, and What We Hope Sticks Around 21/05/2020
Trust Your Instincts; An Early Intervention Can Save Your Life 14/05/2020
Put Your Own Oxygen Mask On First 07/05/2020
Rare Disease Trailblazer and Co-Founder of Disorder - The Rare Disease Film Festival 30/04/2020
Therapy Check-In With Rose Reif 23/04/2020
How Our Rare Kids Can Shape Us 16/04/2020
A Grandfather's Story of Guardianship, Caregiving and Advocacy 09/04/2020
Choosing Hope 02/04/2020
Mental Health and Coping During Covid-19 26/03/2020
School Closures and FAPE 19/03/2020
A Healthier Healthcare For All 12/03/2020
Morgan's Wonderland 05/03/2020
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