Rare Disease — Rare Disease Podcast — Once Upon A Gene

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Posts tagged Rare Disease

ONCE UPON A GENE - EPISODE 271 Caregiver Archetypes for Survival (Part 1) The Child Archetype : Soothe Your Inner Child Without Letting It Drive the Bus, w/ Christy Foster

ONCE UPON A GENE - EPISODE 271 Caregiver Archetypes for Survival (Part 1) The Child Archetype : Soothe Your Inner Child Without Letting It Drive the Bus, w/ Christy Foster

Rare Disease PodcastEffie ParksApril 16, 2026Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 270- From Hopeless Grief to Heavenly Hope: Brittni Lamb on Surrender, Faith, and Raising a Son with Hereditary Spastic Paraplegia SPG3A

ONCE UPON A GENE - EPISODE 270- From Hopeless Grief to Heavenly Hope: Brittni Lamb on Surrender, Faith, and Raising a Son with Hereditary Spastic Paraplegia SPG3A

Rare Disease PodcastEffie ParksApril 2, 2026Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 269- Smarter Speech: How Q-Voice Is Changing AAC for Families and Therapists with Lana Marcucio

ONCE UPON A GENE - EPISODE 269- Smarter Speech: How Q-Voice Is Changing AAC for Families and Therapists with Lana Marcucio

Rare Disease PodcastEffie ParksOctober 24, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 268- Why Genetic Testing Matters: The Case for Genetic Testing and the Start Genetic Movement - with Geraldine Bliss

ONCE UPON A GENE - EPISODE 268- Why Genetic Testing Matters: The Case for Genetic Testing and the Start Genetic Movement - with Geraldine Bliss

Rare Disease PodcastEffie ParksOctober 16, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 267- Mini Brains in a Dish: Organoids and the Future of Personalized Rare Disease Medicine with Dr. Maya Gosztyla

ONCE UPON A GENE - EPISODE 267- Mini Brains in a Dish: Organoids and the Future of Personalized Rare Disease Medicine with Dr. Maya Gosztyla

Rare Disease PodcastEffie ParksOctober 2, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 266- Healing in the Mess: Storytelling, Friendship & Finding Love - Author of The Unlikely Village of Eden, Emma Nadler

ONCE UPON A GENE - EPISODE 266- Healing in the Mess: Storytelling, Friendship & Finding Love - Author of The Unlikely Village of Eden, Emma Nadler

Rare Disease PodcastEffie ParksSeptember 4, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 265- 15 Years of Simons Searchlight: Dr. Wendy Chung on How Families Shape Rare Disease Research and Spark Aha Moments, w/ Wendy Chung

ONCE UPON A GENE - EPISODE 265- 15 Years of Simons Searchlight: Dr. Wendy Chung on How Families Shape Rare Disease Research and Spark Aha Moments, w/ Wendy Chung

Rare Disease PodcastEffie ParksAugust 28, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 264- Finding Joy in the Journey: A Guide for Parents of Medically Complex Kids with Amber Pierson & Chelsea Kuhn

ONCE UPON A GENE - EPISODE 264- Finding Joy in the Journey: A Guide for Parents of Medically Complex Kids with Amber Pierson & Chelsea Kuhn

Rare Disease PodcastEffie ParksJune 5, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 263- From Beast Games Champ to Rare Disease Warrior: 365-Mile Ruck for His Son’s Creatine Transporter Deficiency, w/ Jeff Allen

ONCE UPON A GENE - EPISODE 263- From Beast Games Champ to Rare Disease Warrior: 365-Mile Ruck for His Son’s Creatine Transporter Deficiency, w/ Jeff Allen

Rare Disease PodcastEffie ParksMay 15, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 262- GeneDx Launches Cerebral Palsy Genetic Testing Pillar & Discover Snapshot: For Deeper Insights and to Help You Grow Your Patient Community – with Gay Grossman

ONCE UPON A GENE - EPISODE 262- GeneDx Launches Cerebral Palsy Genetic Testing Pillar & Discover Snapshot: For Deeper Insights and to Help You Grow Your Patient Community – with Gay Grossman

Rare Disease PodcastEffie ParksMay 1, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 261- Empowered Kids - Painless Labs :O'Ryan Health’s At‑Home Blood‑Draw Revolution with Tim Coleman

ONCE UPON A GENE - EPISODE 261- Empowered Kids - Painless Labs :O'Ryan Health’s At‑Home Blood‑Draw Revolution with Tim Coleman

Rare Disease PodcastEffie ParksApril 18, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 260- Navigating the Complexities of Grief: How One Mother’s Grief Birthed a Supportive Community with, Heather Straughter.

ONCE UPON A GENE - EPISODE 260- Navigating the Complexities of Grief: How One Mother’s Grief Birthed a Supportive Community with, Heather Straughter.

Rare Disease PodcastEffie ParksMarch 27, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 259 - How Imagine Pediatrics is Revolutionizing In-Home Medical Care for Medically Complex Kids and Lightening the Load for Families - w/ Taylor Beery & Jody Copp

ONCE UPON A GENE - EPISODE 259 - How Imagine Pediatrics is Revolutionizing In-Home Medical Care for Medically Complex Kids and Lightening the Load for Families - w/ Taylor Beery & Jody Copp

Rare Disease PodcastEffie ParksMarch 20, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 258 - How a Service Dog Helped a Child with CACNA1C-Related Disorder (Timothy Syndrome) Gain Independence – with Sue Bresnahan

ONCE UPON A GENE - EPISODE 258 - How a Service Dog Helped a Child with CACNA1C-Related Disorder (Timothy Syndrome) Gain Independence – with Sue Bresnahan

Rare Disease PodcastEffie ParksMarch 6, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 257 - Unlocking Rare Disease Diagnoses with PacBio’s Long-Read Sequencing – A Conversation with CEO Christian Henry

ONCE UPON A GENE - EPISODE 257 - Unlocking Rare Disease Diagnoses with PacBio’s Long-Read Sequencing – A Conversation with CEO Christian Henry

Rare Disease PodcastEffie ParksFebruary 27, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 256 - Prioritizing Caregiver Health: Gut Health, Stress, and Sustainable Wellness for Parents of Kids with Disabilities –Integrative Health Practitioner, Fraser Bridgeman

ONCE UPON A GENE - EPISODE 256 - Prioritizing Caregiver Health: Gut Health, Stress, and Sustainable Wellness for Parents of Kids with Disabilities –Integrative Health Practitioner, Fraser Bridgeman

Rare Disease PodcastEffie ParksFebruary 20, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 255 - Breaking the Silence: Growing Up with Sickle Cell, Facing Pain, and Finding Strength Through Advocacy with James Griffin

ONCE UPON A GENE - EPISODE 255 - Breaking the Silence: Growing Up with Sickle Cell, Facing Pain, and Finding Strength Through Advocacy with James Griffin

Rare Disease PodcastEffie ParksJanuary 30, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 254 - Lighting the Way: A Story of Love, Friendship, and Finding New Dreams - CERT1 w/ Samantha & Wesley Rogers

ONCE UPON A GENE - EPISODE 254 - Lighting the Way: A Story of Love, Friendship, and Finding New Dreams - CERT1 w/ Samantha & Wesley Rogers

Rare Disease PodcastEffie ParksJanuary 23, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 253- Preconception & Prenatal Genetic Testing 101: A Conversation with Genetic Counselor, Natalie Richheimer

ONCE UPON A GENE - EPISODE 253- Preconception & Prenatal Genetic Testing 101: A Conversation with Genetic Counselor, Natalie Richheimer

Natalie emphasizes that knowledge truly is power when it comes to family planning and navigating the complexities of genetic information.

Rare Disease PodcastEffie ParksJanuary 22, 2025Rare Disease, Special Needs Podcast

ONCE UPON A GENE - EPISODE 253- Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples

ONCE UPON A GENE - EPISODE 253- Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples

Dr. Eskandari shares how his dedication to helping children and families has driven him to create a system that collects and preserves valuable CNS samples—residual materials that would otherwise be discarded.

Rare Disease PodcastEffie ParksJanuary 9, 2025Rare Disease, Special Needs Podcast