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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 9 de 18

Effisode - The Lunchboxes 09/08/2022
When Your Career and Personal Life Collide - VP of Medical and Science Strategy and Head of Syneos Health's Rare Disease Consortium FSHD Rare Dad - Raymond Huml 04/08/2022
Ensuring that the Patient and Caregiver Voice are Part of Clinical Trial Design and Engagement - Bridging the Gap with Industry with Shazia Ahmad 28/07/2022
Effisode - CTNNB1 Awareness Day - Rare Disease Family Meet-Up 26/07/2022
Summer Surfing - Get On Top of the IEP Wave - Things You Can Do This Summer to Make Next Year Better with Gay Grossman 21/07/2022
A Rare Collection - I Will Never Forget 14/07/2022
Effisode - Back on Track - All Aboard the Inclusion Train 12/07/2022
Half of the Day She's a Diversity Champion, the Other Half a Rare Disease Mom and Caregiver with Yosr Hamza 07/07/2022
A Rare Mama Bear - Being a Single Parent and Adopting a Rare Disease Child with Epidermolysis Bullosa 30/06/2022
Effisode - Global Genes RARE Disease Patient Advocacy Summit 28/06/2022
Picking the Brain of a Rare Disease Dad - With CTNNB1 Dadvocate - Casey Parks 23/06/2022
A Rare Collection - Remember Who You Are 16/06/2022
Effisode - Find Your Fairy Godmother 14/06/2022
Episode 138 - When Your Child is Facing the Most Severe Form of Human Epilepsy You fight Until the Death - Literally - Chelsea's Hope Lafora Children Research Fund with Niki Markou and Jenifer Merriam 09/06/2022
Advancing Therapies for Rare Liver Diseases and Alagille Syndrome with FDA Approved LIVMARLI with Chris Peetz - CEO of Mirum Pharmaceuticals 02/06/2022
Effisode - Guilt - Ain't Nobody Got Time for That 31/05/2022
The Value of Intensive Therapy for Kids with Disabilities with Jessie Cline and Erin Garrison of Climb Intensive Pediatric Therapy 26/05/2022
A Rare Collection - Up At Night 19/05/2022
Effisode - RARE Entrepreneur Bootcamp Warriors 17/05/2022
The Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease 12/05/2022
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