Once Upon A Gene
Effie ParksAs 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 monthly | Episodes | 360 | Founded | 7 years ago |
|---|---|---|---|---|---|
| Number of Listeners | Categories | ParentingKids & FamilyPersonal JournalsSociety & Culture | |||
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Latest Episodes
Effie welcomes Matt Abernethy, a father and biotech executive whose story feels almost too perfectly timed to be real. Matt’s youngest son, Ian (now 13), was diagnosed with classic congenital adrenal hyperplasia (CAH) at age two. While navigating the... more
Hannah Lowe is back on the show. In this episode, Effie and Hannah discuss do not resuscitate orders for children with rare diseases. Hannah shares her experience with her son Austin and how the conversation around DNRs came up for their family. They... more
Bryan Docobo — attorney, father, rare disease advocate, and
founder of the Coats Plus Foundation. Bryan opens up about the devastating journey of losing his four-year-old son Ethan to Coats Plus Syndrome (a rare telomere disorder caused by a CTC1 gen... more
Get your free Nome report at www.nome.bio – Families can upload a genetic report and receive a free personalized therapy feasibility report in minutes.
In this powerful conversation, Effie Parks sits down with Steven Ringel — patient, sibling of a p... more
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Reviews
- Q-Voice discussion was fantastic
I loved the discussion with Lana Marcucio about Q-Voice. It’s inspiring to see what brilliant and dedicated parents can create! The AI features and the scripts have so much promise for anyone who has trouble speaking (including for anyone who has English as a second language). Thank you for exposing us to such interesting and creative individuals!
Apple Podcasts5DZDuck
United States9 months ago - SO encouraging and relatable!
I absolutely LOVE this podcast. From the second I found it after my sons diagnosis I knew I had found a support system of real, wise, and encouraging support from Effie and community💗✨. I’ve even had the opportunity to meet Effie in real life and she is the real deal! Such a heart to encourage and bring caregivers together to make our journeys a little more joyful and help us feel not so alone. Forever grateful for Effie, this community and all the resources!
Apple Podcasts5BrittaLambUnited Statesa year ago - Power of community
Thank you for teaching us the power of community in rare disease! Your podcast is such a light in this world. You’ve inspired me to help establish a foundation for my family member 🩷
Apple Podcasts5review 838United Statesa year ago - Best podcast
This is the absolute best podcast for parents with kids with disabilities. Effie is such a positive and amazing mom, friend, and a leader. Her positive energy is very contagious.
Apple Podcasts5Kasia LawUnited Statesa year ago - A Great podcast!
I love listening to the podcast! Effie’s understanding and connection with her guests allows them to share their stories in an authentic way! Her podcast is uplifting, informative, and inspiring! Anyone on their rare disease journey or in the space should listen to Once Upon A Gene!
Apple Podcasts5Jamesgriff3United Statesa year ago
Listeners Say
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Chart Rankings
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Apple Podcasts | #170 |  Austria/Society & Culture/Personal Journals |
Apple Podcasts | #249 |  Switzerland/Society & Culture/Personal Journals |
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Frequently Asked Questions About Once Upon A Gene
What is Once Upon A Gene about and what kind of topics does it cover?
A podcast focused on families navigating rare genetic conditions, featuring caregivers, patient advocates, researchers, clinicians, and tech founders who are advancing diagnostics, therapies, and support tools. Episodes blend personal journeys with practical strategies—from archetype-based caregiving frameworks and self-care to cutting-edge research like AI-powered therapies, organoid models, and genetic testing advocacy. The show is notable for bridging heart-centered storytelling with actionable insights for families, clinicians, researchers, and advocates, often highlighting community, resilience, and funded paths forward in the rare disease space.
Where can I find podcast stats for Once Upon A Gene?
Rephonic provides a wide range of podcast stats for Once Upon A Gene. We scanned the web and collated all of the information that we could find in our comprehensive podcast database. See how many people listen to Once Upon A Gene and access YouTube viewership numbers, download stats, audience demographics, chart rankings, ratings, reviews and more.
How many listeners does Once Upon A Gene get?
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What are the audience demographics for Once Upon A Gene?
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How many subscribers and views does Once Upon A Gene have?
To see how many followers or subscribers Once Upon A Gene has on Spotify and other platforms such as Castbox and Podcast Addict, simply upgrade your account. You'll also find viewership figures for their YouTube channel if they have one.
Which podcasts are similar to Once Upon A Gene?
These podcasts share a similar audience with Once Upon A Gene:
1. The Rare Life
2. Up First from NPR
3. The Lazy Genius Podcast
4. The Daily
5. The Headlines
How many episodes of Once Upon A Gene are there?
Once Upon A Gene launched 7 years ago and published 360 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.
How do I contact Once Upon A Gene?
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Where can I see ratings and reviews for Once Upon A Gene?
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What guests have appeared on Once Upon A Gene?
Recent guests on Once Upon A Gene include:
1. Bryan Docobo
2. Steven Ringel
3. Christy Foster
4. Brittni Lamb
5. Lana Marcucio
6. Geraldine Bliss
7. Maya Gosztyla
8. Emma Nadler
To view more recent guests and their details, simply upgrade your Rephonic account. You'll also get access to a typical guest profile to help you decide if the show is worth pitching.