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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 7 de 18

Honoring a Husbands Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter 09/02/2023
Effisode - Barbara Is Real 07/02/2023
From Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts 02/02/2023
Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella 26/01/2023
Effisode - Seizures Are Stupid 24/01/2023
A Rare Collection - New Beginnings 19/01/2023
Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO Dadvocate Andrés Treviño 12/01/2023
Effisode - The Friendship Circle 10/01/2023
Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel 05/01/2023
Care Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer 29/12/2022
Effisode - Rare Disease Day 2023 27/12/2022
A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD 22/12/2022
A Rare Collection - Holiday Cheer 15/12/2022
Effisode - Presents, Portraits and Beyond the Diagnosis 13/12/2022
The Clinical Pharmacist - Why They Are A VIP For Our Care Team and How We Can Get to Know Them - With NARS1 Rare Disease Mom - Rachel Heilmann 08/12/2022
How Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson 01/12/2022
Effisode - Fire and Ice 29/11/2022
Your Career and Personal Life Collide - Senior Vice President, Head of Development and Safety of Alexion, AstraZeneca and Smith Magenis Rare Disease Dad Gianluca Pirozzi 24/11/2022
A Rare Collection - Beep, Beep, Beep 17/11/2022
Effisode - The List 15/11/2022
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