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.
345 episodios disponibles

Latest episodes of the podcast Once Upon A Gene

Mostrando página 13 de 18

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
Effisode - Adventures in the Grocery Store 20/04/2021
Media with a Mission with Believe Limited CEO Patrick James Lynch 15/04/2021
Top Tips on Advocating For Your Child with Momvocate Kara Karlson 08/04/2021
Effisode - Nacho, Nacho Man 06/04/2021
AllStripes - Jump Start New Research for Your Rare Disease with Caitlin Nichols 01/04/2021
Rare Mom Madeline Cheney - The Rare Life Podcast 25/03/2021
Effisode - An Advocate's Elevator Pitch 23/03/2021
Rare Disease Mom Chat with Mariah Gillaspie - Lightning and Love Foundation 18/03/2021
David Solomon - CEO of Pharnext - A Biopharmaceutical Company 11/03/2021
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