"I love Once Upon A Gene- Rare Disease Podcast"

2022-10-08 03:27:47

Cart 0 Welcome Merch Podcast Blog About PRESS Contact Cart 0 WelcomeMerchPodcastBlogAboutPRESS Contact Scroll So excited to be the 2021 WEGO Health Award Winner for Best in Show: PodcastThank you to The Disorder Channel for selecting Once Upon A Gene as The Best Rare 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 and through the isolation I was feeling, 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, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong. Listen Now Once Upon A Gene PodcastOnce Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Host, Effie Parks shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story. If you want to share your story please reach out at [email protected] Upon a Gene is available on Apple Podcasts. Contact Effie Parks New Page My child was born with a rare disease Once Upon A Gene - Rare Disease Podcast Contact [email protected]