Once Upon A Gene
Sobre este podcast
Descripción del podcast
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.
Autor: Effie Parks
Temas populares:
rare diseases rare disease parenting family patient advocacy disability family support familia child development communityDuración Total:
160 hr 13 min
Todos los episodios
Care Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer
29 Dic, 2022ONCE UPON A GENE - EPISODE 167 Care Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer Chase Palmer is a pharmacist on the board of Alström Syndrome International. In rare disease, we need all the help we …
Duración: 28 minEffisode - Rare Disease Day 2023
27 Dic, 2022Intro music by Scott Holmes
Duración: 2 minA Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD
22 Dic, 2022ONCE UPON A GENE - EPISODE 166 A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD Dr. Wendy Kay Chung cares deeply about rare kids and …
Duración: 36 minA Rare Collection - Holiday Cheer
15 Dic, 2022ONCE UPON A GENE - EPISODE 165 A Rare Collection - Holiday Cheer There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story …
Duración: 18 minEffisode - Presents, Portraits and Beyond the Diagnosis
13 Dic, 2022Intro music by Scott Holmes
Duración: 3 minThe 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 Dic, 2022ONCE UPON A GENE - EPISODE 164 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 Rachel Heilmann is …
Duración: 38 minHow Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson
01 Dic, 2022ONCE UPON A GENE - EPISODE 163 How Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson FOXG1 Research Foundation Co-Founder and rare mom, Nicole Johnson, shares takeaways …
Duración: 44 minEffisode - Fire and Ice
29 Nov, 2022Intro music by Scott Holmes
Duración: 9 minYour 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 Nov, 2022ONCE UPON A GENE - EPISODE 162 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 Gianluca Pirozzi is a dadvocate and Senior …
Duración: 38 minA Rare Collection - Beep, Beep, Beep
17 Nov, 2022ONCE UPON A GENE - EPISODE 161 A Rare Collection - Beep Beep Beep There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a …
Duración: 21 min
