Once Upon A Gene
Once Upon A Gene
883 FOLLOWERS
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..
ONCE UPON A GENE - EPISODE 226 - From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
Once Upon A Gene
by Effie Parks
5d ago
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ONCE UPON A GENE - EPISODE 224 - The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
Once Upon A Gene
by Effie Parks
2w ago
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ONCE UPON A GENE - EPISODE 223 - Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio
Once Upon A Gene
by Effie Parks
3w ago
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ONCE UPON A GENE - EPISODE 222 - Krabbe Disease with Kasey Feldt
Once Upon A Gene
by Effie Parks
1M ago
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ONCE UPON A GENE - EPISODE 221 - BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
Once Upon A Gene
by Effie Parks
1M ago
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ONCE UPON A GENE - EPISODE 220 - A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
Once Upon A Gene
by Effie Parks
1M ago
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ONCE UPON A GENE - EPISODE 218 - James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
Once Upon A Gene
by Effie Parks
2M ago
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ONCE UPON A GENE - EPISODE 217 - Uniting Science and Hope - COMBINEDBrain and its Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
Once Upon A Gene
by Effie Parks
2M ago
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ONCE UPON A GENE - EPISODE 201 - Five Advocacy Aces Share Their Conference Commandments
Once Upon A Gene
by Effie Parks
2M ago
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ONCE UPON A GENE - EPISODE 216 - Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
Once Upon A Gene
by Effie Parks
3M ago
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