ONCE UPON A GENE - EPISODE 194 - A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber Rare Disease PodcastEffie ParksJuly 13, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 193 - Claudia Gonzaga Jauregui Rare Disease PodcastEffie ParksJuly 6, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 192 - A Tale of a Gene Therapy that Cures her Daughter with AADC Deficiency with Carolina Moreno Rare Disease PodcastEffie ParksJune 22, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 191 - A Father's Day Special - Amidst the Storm Rare Disease PodcastEffie ParksJune 15, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 190 - SCN8A Rare Mom - The Inch Stone Project and DEE-P Connections Rare Disease PodcastEffie ParksJune 8, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 189 - Developing Personalized Therapeutics for Ultra Rare Patients with La Jolla Labs CEO Jeff Milton Rare Disease PodcastEffie ParksJune 1, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 188 - Rare Mom, Scientist and Co-Founder of the MAST Genes Research Foundation with Dr. Kim Aldinger Rare Disease PodcastEffie ParksMay 25, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 187 - Keep Digging Rare Disease PodcastEffie ParksMay 18, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 186 - The Tréxō Robot and the Many Benefits of this Technology for Kids with Disabilities with the Founder and CEO Manmeet Maggu Rare Disease PodcastEffie ParksMay 11, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 185 - The Outlet - How Chris Anselmo Used Writing to Connect with Other Rare Disease Families and Come to Terms with His Own Diagnosis of Limb-Girdle Muscular Dystrophy Rare Disease PodcastEffie ParksMay 4, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 184 - More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade Rare Disease PodcastEffie ParksApril 27, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 183 - Wishing Well Rare Disease PodcastEffie ParksApril 20, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 182 - Doctor and Rare Disease Dad Is On A Mission to Accelerate Research and Drug Development Efforts for His Child's KCNT1 Epilepsy with Dadvocate Dr. Justin West Rare Disease PodcastEffie ParksApril 14, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 181 - Helping Undiagnosed Patients Who Experience Symptoms of Rare Diseases Find Answers with Free Genetic Testing in a Matter of Weeks with Probably Genetic CEO Lukas Lange Rare Disease PodcastEffie ParksApril 6, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 180 - Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael Rare Disease PodcastEffie ParksMarch 30, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 179 - Take Part Founders and PYROXD-1 Parents - Matt and Maria Granados Rare Disease PodcastEffie ParksMarch 23, 2023Rare Disease, Special Needs Podcast
