Once Upon A Gene- Rare Disease Podcast
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kristinLKanderson avatar
kristinLKanderson
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Iā€™ve been a rare parent for 10 years, and this podcast is one of the best resources Iā€™ve come across. These episodes are informative, engaging, and inspirational, and I canā€™t wait to listen to more! Thank you, Effie, and to all of your incredible guests for sharing these stories with all of us!
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LCC_Mom
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This podcast is a beacon of hope and encouragement as a mom of an ultra rare kiddo. I find it invaluable and super meaningful to know that I am not alone on this journey. Also, it has been an amazing resource for navigating the world of advocacy. šŸ§¬šŸ¦“
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leilamargolis
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when your child is diagnosed with a rare genetic condition the emotions flood in and it feels like there is no where to turn. pod casts like this help a mom like me navigate the complex landscape that come along with a diagnosis
ebschneider avatar
ebschneider
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Once Upon A Gene is absolutely required listening for rare disease patients, families, caregivers, providers and advocates! Effie does an amazing job in navigating both the world of science and the world of the heart when it comes to life with rare disease. 5 stars.
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siedmanfam
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I learn something new each time I listen to Once Upon a Gene. As a bereaved mom I appreciated Yssaā€™s honest words about the keeping the balance of tenderness and facts, and learning to tell a new story after the loss of your child. I also think about the ways to still welcome others into my story now that my son is gone.
Jaime Middaugh avatar
Jaime Middaugh
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As a mother of a newly diagnosed rare child, it is empowering to hear the stories and learn from the experiences of other rare families that are further along in their journey. Each episode provides invaluable wisdom of things rare parents can be mindful of, and provides hope in knowing we are not alone.
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RareMomvocate
apple_podcasts
This podcast saved me in the first months of our rare disease journey, and has continued to ever since. I have laughed, cried, and experienced every emotion in between. This podcast needs to go out to every family on diagnosis day, this is the embrace and community I needed and took months to find. So happy to have found you.
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So excited to be the 2021 WEGO Health Award Winner for Best in Show: Podcast

 

Thank you to The Disorder Channel for selecting Once Upon A Gene as The Best Rare Podcast

 

Thank you to SPEAK UP TALK RADIO for selecting Once Upon A Gene as Cause Awareness 1st Place.

 

 
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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.

 

Once Upon A Gene Podcast

Once 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 podcasts@ctnnb1.org

Once Upon a Gene is available on Apple Podcasts.