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... more
Publishes | Twice weekly | Episodes | 300 | Founded | 4 years ago |
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Number of Listeners | Categories | ParentingPersonal JournalsSociety & CultureKids & Family |
ONCE UPON A GENE - EPISODE 226 more
ONCE UPON A GENE - EPISODE 225 more
ONCE UPON A GENE - EPISODE 224 more
ONCE UPON A GENE - EPISODE 223 more
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As a parent navigating the unique challenges of raising a child with a rare disease, discovering the “Once Upon a Gene” podcast has been a game-changer for me. Listening to Effie, along with her guests who are also rare parents, provides an incredible sense of support and community. It’s profoundly comforting and empowering to hear from someone who truly understands the journey. Effie’s empathetic approach and the shared experiences of her guests offer invaluable insights and hope. This podcast ... more
Becoming a rare disease parent is not something I ever dreamt of when I was a little girl. The realization of it all was terrifying. Shortly after we got our CTNNB1 diagnosis I found Once Upon a Gene. I didn’t feel so alone anymore. I get inspired by listening and makes me want to make a difference myself. You truly are one amazing rare disease momma effie. Thank you for bringing so much joy and light on the rare disease world. more
I just listened to your podcast with Lindsey Topping-Schuetz and I am blown away! I have know Lindsey for years, but to hear her speak and advocate for Owen and others with rare diseases is amazing! Keep up the great work.
Effie is a wonderful interviewer. Her topics are insightful, inspiring, and educational. Her effiesodes are so relatable. Having a child with a disability, I wasn’t sure if I could relate to a rare disease mom. So thankful I was wrong. I’ve never felt so seen when she said she wanted to light those survey assessments on fire. Lol. Thanks for putting this gem out there.
Apple Podcasts | #238 | United States/Society & Culture/Personal Journals |
Apple Podcasts | #218 | United Kingdom/Society & Culture/Personal Journals |
Listeners, engagement and demographics and more for this podcast.
Listeners per Episode | Gender Skew | Engagement Score | |||
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Once Upon A Gene launched 4 years ago and published 300 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.
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