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
ONCE UPON A GENE - EPISODE 178 - Exhausted and Energized Rare Disease PodcastEffie ParksMarch 16, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 177 - Real Rare Mama Shop Talk - Deciding What We Share About Our Lives and Recognizing How Far We've Come with Each Passing Year with Alyssa Poskarbiewicz Rare Disease PodcastEffie ParksMarch 9, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 176 - Love, Hope and Cure SYNGAP Rare Disease PodcastEffie ParksFebruary 28, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 175 - Every Patient Matters - Discovering, Developing, and Providing Experimental ASO Treatments to Nano-Rare Patients for Free with n-Lorem Founder and CEO Stan Crooke Rare Disease PodcastEffie ParksFebruary 23, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 174 - To the Moon and Back Rare Disease PodcastEffie ParksFebruary 17, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 173 - Honoring a Husband’s Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter Rare Disease PodcastEffie ParksFebruary 9, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 172 - From Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts Rare Disease PodcastEffie ParksFebruary 2, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 171 - Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella Rare Disease PodcastEffie ParksJanuary 26, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 170 - New Beginnings Rare Disease PodcastEffie ParksJanuary 19, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 169 - Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO dadvocate Andrés Treviño Rare Disease PodcastEffie ParksJanuary 12, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 168 - Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel Rare Disease PodcastEffie ParksJanuary 5, 2023Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 167 - Care Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer Rare Disease PodcastEffie ParksDecember 29, 2022Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 166 - A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD Rare Disease PodcastEffie ParksDecember 22, 2022Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 165 - A Rare Collection - Holiday Cheer Rare Disease PodcastEffie ParksDecember 15, 2022Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 164 - The Clinical Pharmacist - Why They Are A VIP For Our Care Team and How We Can Get to Know Them - With NARS1 Rare Disease Mom - Rachel Heilmann Rare Disease PodcastEffie ParksDecember 8, 2022Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 163 - How Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson Rare Disease PodcastEffie ParksDecember 1, 2022Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 162 - Your Career and Personal Life Collide - Smith Magenis Rare Disease Dad Gianluca Pirozzi Rare Disease PodcastEffie ParksNovember 24, 2022Rare Disease, Special Needs Podcast
ONCE UPON A GENE - EPISODE 161 - A Rare Collection - Beep, Beep, Beep Rare Disease PodcastEffie ParksNovember 17, 2022Rare Disease, Special Needs Podcast
