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 7 de 18

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
A Mom's Advocacy For Her Son Who Has Hemophilia B Led to Her Own Diagnosis - With Stormy Johnson 10/11/2022
Social Security Disability Revealed - Why It's So Hard to Access Benefits and What You Can Do About It with Spencer Bishins 03/11/2022
Effisode - Chasing Greenlights 01/11/2022
Medical Student - Urvi Gupta Joins the Global Genes Rare Compassion Program with Alexions Patient Advocacy Champion Wendy Erler 27/10/2022
The Effects of Rare Disease on Relationships and How to Cope When You and Your Partner Have Different Strategies with KCNH1 Founder and Rare Mama Michaelle Jinnette 20/10/2022
Effisode - Gravity 18/10/2022
A Rare Collection - Batten Down the Hatches 13/10/2022
CRELD1 Dadvocate Paying the Ultimate Price - Seeking Diagnosis for His Two Children, and Raising Awareness with Adam Clatworthy 06/10/2022
Effisode - Gilmore Girls, Pumpkin Spice, and Baja 04/10/2022
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