All Episodes
Once Upon A Gene — 360 episodes
ONCE UPON A GENE –EPISODE 278: His Son Was Diagnosed with Congenital Adrenal Hyperplasia (CAH) — A Dad’s Honest Story of Overwhelm, Faith, and Finding Hope Through Treatment w/ Matt Abernethy
ONCE UPON A GENE – EPISODE 277: A Mother’s Son Was Diagnosed with the Rare, Debilitating Disease LMNA-Related Congenital Muscular Dystrophy (L-CMD) — A Mother’s Story of DNR Orders and How Those Decisions Change Over Time with Hannah Lowe
ONCE UPON A GENE – EPISODE 276: His Two Sons Were Diagnosed with Coats Plus Syndrome — One Father’s Story of Rare Disease Advocacy and Brotherhood with Bryan Docobo
ONCE UPON A GENE – EPISODE 275: How AI is Making Personalized Therapies Faster, Cheaper, and Accessible for the World’s Rarest Diseases with Steven Ringel
ONCE UPON A GENE – EPISODE 274: Caregiver Archetypes of Survival (Part 4) | The Victim Archetype: From Cowardly Lion to Roaring Warrior – Reclaiming Your Inner Courage Without Losing Yourself with Christy Foster
ONCE UPON A GENE - EPISODE 273 Caregiver Archetypes of Survival (Part 3) The Saboteur Archetype: Reclaiming Your Inner Authority Without Losing Yourself, w/ Christy Foster
ONCE UPON A GENE - EPISODE 272 Caregiver Archetypes of Survival (Part 2) The Prostitute Archetype: Reclaiming Your Worth Without Losing Yourself, w/ Christy Foster
Caregiver Archetypes for Survival (Part 1) The Child Archetype : Soothe Your Inner Child Without Letting It Drive the Bus, w/ Christy Foster
From Hopeless Grief to Heavenly Hope: Brittni Lamb on Surrender, Faith, and Raising a Son with Hereditary Spastic Paraplegia SPG3A
Smarter Speech: How Q-Voice Is Changing AAC for Families and Therapists with Lana Marcucio
Why Genetic Testing Matters: The Case for Genetic Testing and the Start Genetic Movement - with Geraldine Bliss
Mini Brains in a Dish: Organoids and the Future of Personalized Rare Disease Medicine
Healing in the Mess: Storytelling, Friendship & Finding Love - Author of The Unlikely Village of Eden, Emma Nadler
15 Years of Simons Searchlight: Dr. Wendy Chung on How Families Shape Rare Disease Research and Spark Aha Moments - with Wendy Chung
A Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point
Finding Joy in the Journey: A Guide for Parents of Medically Complex Kids with Amber Pierson & Chelsea Kuhn
From Beast Games Champ to Rare Disease Warrior: Jeff Allen’s 365-Mile Ruck for His Son’s Creatine Transporter Deficiency
GeneDx Launches Cerebral Palsy Genetic Testing Pillar & Discover Snapshot: For Deeper Insights and to Help You Grow Your Patient Community – with Gay Grossman
Empowered Kids - Painless Labs :O'Ryan Health’s At‑Home Blood‑Draw Revolution with Tim Coleman
Navigating the Complexities of Grief: How One Mother’s Grief Birthed a Supportive Community with, Heather Straughter.
Reimagining Pediatric Healthcare: How Imagine Pediatrics is Revolutionizing In-Home Medical Care for Medically Complex Kids and Lightening the Load for Families - Taylor Beery and Jody Copp
How a Service Dog Helped a Child with CACNA1C-Related Disorder (Timothy Syndrome) Gain Independence – with Sue Bresnahan
Unlocking Rare Disease Diagnoses with PacBio’s Long-Read Sequencing – A Conversation with CEO Christian Henry
Prioritizing Caregiver Health: Gut Health, Stress, and Sustainable Wellness for Parents of Kids with Disabilities – with Integrative Health Practitioner & CTNNB1 Mom, Fraser Bridgeman
Breaking the Silence: Growing Up with Sickle Cell, Facing Pain, and Finding Strength Through Advocacy with James Griffin
Lighting the Way: A Story of Love, Friendship, and Finding New Dreams - CERT1 w/ Samantha & Wesley Rogers
Preconception & Prenatal Genetic Testing 101: A Conversation with Genetic Counselor, Natalie Richheimer
Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples
Eight Years of Searching: A Determined Family’s Quest to Cure an Ultra-Rare CLCN6 Mutation with Kristin & Paul Purdy
Chasing Glimmers - From Grief to Glitter: Parenting Through Infantile MLD and Embracing Life’s Full Spectrum - with Megan Gillet
The Gift of Grace: A Holiday Heart-to-Heart for Caregivers
Grateful Reflections for Epilepsy Awareness Month: Parents Share Love, Lessons, and Insights from the Dravet Syndrome Community
Ready for Take Off: Mission for Accessible Air Travel & Disability Advocacy, with Mindy Henderson
The Unique Expertise of a Genetic Counselor - Helping Rare Disease Individuals and Families Navigate Through Complex Emotions and Circumstances Like Guilt, Grief, and Shame with Mary-Frances Garber
Hospital Survival Kit - Advocating for Your Child Without Losing Yourself
Real-World Self-Care for Caregivers - Tiny Wins, Small Shifts, and Taking Back Your Power
Finding Strength in Friendship - Building In-Person Connections for Special Needs Moms with Colorado Mama Tribe - Mariah Gillaspie
Beginners Guide to Rare Disease - Wisdom from Others Who Have Been There
Chasing Glimmers - Electric Love Disability Retreats
Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections
Chasing Glimmers - Whats Glimmering with Katie Lloyd
A Mother's Mission - Project Baby Lion, ASO Therapy and the TNP02 Foundation with Yiwei She
Navigating Physical and Emotional Stress and Noticing Where It Shows Up In Our Body As A Rare Disease Caregiver - With Christy Foster
Where the Glimmers Can Surface
Join Us for The Global Genes Week In Rare
Rare Disease Research - Insights from Charles River Labs with Roxana Redis and David Fischer
Rare Connections in NMOSD (Neuromyelitis Optics) - Finding Strength in Community and the Power in Asking for Help with Craig Klein
Chasing Glimmers - Illuminating Hope and Lessons in the Rare Disease Journey - Finding Glimmers for a Happier, Healthier Life with Katie Lloyd
Are You Worried About Your Baby's Development - Enroll in Project FIND-OUT - You May Qualify for Free Whole Genome Sequencing
Understanding Genetic Counseling - Essential Insights for Parents – Navigating Appointments, Referrals, Testing, and Insurance with Expert Abby Turnwald MS CGC
The Power of Genetic Diagnosis - More Than Just a Label
Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick
Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber
Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio
Krabbe Disease with Kasey Feldt
BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini
James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
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
Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
Finding Strength In Every Step
Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin
The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia
GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka
A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies
Turkey Soup for the Soul
Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhD
Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping - Schuetz
Palliative Care & the Courageous Parent Network with Founder Blyth Lord
Figuring Out How to Infuse Meaning in the Days After the Loss of a Child and the Daunting Task of What the Hell to do Now with Liz Morris
Mastering the Art of the Supermarket Answer When Someone Asks, How Are You with Jennifer Siedman
From Heartbreak to Hope - With CEO of Parent Project Muscular Dystrophy, Pat Furlong
Effisode - The Irony of it All
These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio
Utilizing Child Life Specialists - Empowering Rare Disease and Medically Complex Families in Hospitals Nationwide with Child Life On Call Founder - Katie Taylor
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
Effisode - 2023 SynGAP Cannonball for a Cure
Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens
Navigating Parenthood as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network
Effisode - The Unconventional Toothfairy
Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody
Rare Disease Dad Chronicles - From Stay-At-Home Fatherhood to My Mejo Co-Founder A Journey Through Costello Syndrome and Parenthood Challenges with Dadvocate - Ryan Sheedy
Effisode - Summer Camp for Medically Complex Kids
A Rare Collection - Schools Out for the Summer
Anecdotes From a Rare Disease Dad of an Adult Son with NR4A2 with Joe Henry
A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber
Claudia Gonzaga Jauregui
From the Rare Disease Bunker to Many More Birthdays - A Tale of a Gene Therapy that Cures her Daughter with AADC Deficiency - The First Spanish Patient - with Carolina Moreno
A Rare Collection - A Father's Day Special - Amidst the Storm
SCN8A Rare Mom - The Inch Stone Project and DEE-P Connections - Creating Better Tools, Resources and Research for the Most Severely Affected Families with Gabi Conecker
Developing Personalized Therapeutics for Ultra Rare Patients with La Jolla Labs CEO Jeff Milton
How Being a Mom to Twins with a Rare and Undiagnosed Condition Has Shaped Rare Mom, Scientist and Co-Founder of the MAST Genes Research Foundation with Dr. Kim Aldinger
Effisode - Are We The Actors
A Rare Collection - Keep Digging
The Tréxō Robot and the Many Benefits of this Technology for Kids with Disabilities with the Founder and CEO Manmeet Maggu
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
A Rare Collection - Wishing Well
Effisode - The Ultimate Rare Disease Resource Guide
Doctor and Rare Disease Dad Is On A Mission to Accelerate Research and Drug Development Efforts for His Childs KCNT1 Epilepsy with Dadvocate Dr. Justin West
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
Effisode - There's No Crying In Baseball
Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael
Take Part Founders and PYROXD-1 Parents - Matt and Maria Granados
Effisode - Wheelchairs and Walls
A Rare Collection - Exhausted and Energized
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 CHARGE Syndrome Mom
Love, Hope and Cure SYNGAP
Every Patient Matters - Discovering, Developing, and Providing Experimental ASO Treatments to Nano-Rare Patients for Free with n-Lorem Founder and CEO Stan Crooke
Effisode - Rare Disease Day Events
A Rare Collection - To the Moon and Back
Honoring a Husbands Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter
Effisode - Barbara Is Real
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
Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella
Effisode - Seizures Are Stupid
A Rare Collection - New Beginnings
Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO Dadvocate Andrés Treviño
Effisode - The Friendship Circle
Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel
Care Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer
Effisode - Rare Disease Day 2023
A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD
A Rare Collection - Holiday Cheer
Effisode - Presents, Portraits and Beyond the Diagnosis
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
How Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson
Effisode - Fire and Ice
Your Career and Personal Life Collide - Senior Vice President, Head of Development and Safety of Alexion, AstraZeneca and Smith Magenis Rare Disease Dad Gianluca Pirozzi
A Rare Collection - Beep, Beep, Beep
Effisode - The List
A Mom's Advocacy For Her Son Who Has Hemophilia B Led to Her Own Diagnosis - With Stormy Johnson
Social Security Disability Revealed - Why It's So Hard to Access Benefits and What You Can Do About It with Spencer Bishins
Effisode - Chasing Greenlights
Medical Student - Urvi Gupta Joins the Global Genes Rare Compassion Program with Alexions Patient Advocacy Champion Wendy Erler
The Effects of Rare Disease on Relationships and How to Cope When You and Your Partner Have Different Strategies with KCNH1 Founder and Rare Mama Michaelle Jinnette
Effisode - Gravity
A Rare Collection - Batten Down the Hatches
CRELD1 Dadvocate Paying the Ultimate Price - Seeking Diagnosis for His Two Children, and Raising Awareness with Adam Clatworthy
Effisode - Gilmore Girls, Pumpkin Spice, and Baja
A Groundbreaking Gene Therapy In Record Time to Cure His Son with SPG50 Sets a New Course For Future Rare Disease Treatments with Terry Pirovalakis
Improving Inclusion Practices in Schools with the Inclusive Educator - Bre Gastaldi
Effisode - Shake It Off
A Rare Collection - Underestimated
Rare Friends Forever - Hanging Out and Showing Some Love to Brene Brown with Katie Lloyd and Adam Johnson
Effisode - Inclusion Revolution
Rare Disease Families Have Plenty of Hope - What They Need is Help. Transforming Drug Development w/ NF2 Biosolutions, Nicole Henwood & Vibe Bio, Alok Tayi
Together We Can Cure Single-Gene Disorders Starting with PGAP3 - Moonshot - An Ambitious and Innovative Project with Geri and Zach Landman
Effisode - Montana or Bust
Rare Disease Siblings, The Glass House Children - Bulletproof and Shattered - With SMA Sibling Cara Freedman
A Rare Collection - Easier Said Than Done
Effisode - The Lunchboxes
When Your Career and Personal Life Collide - VP of Medical and Science Strategy and Head of Syneos Health's Rare Disease Consortium FSHD Rare Dad - Raymond Huml
Ensuring that the Patient and Caregiver Voice are Part of Clinical Trial Design and Engagement - Bridging the Gap with Industry with Shazia Ahmad
Effisode - CTNNB1 Awareness Day - Rare Disease Family Meet-Up
Summer Surfing - Get On Top of the IEP Wave - Things You Can Do This Summer to Make Next Year Better with Gay Grossman
A Rare Collection - I Will Never Forget
Effisode - Back on Track - All Aboard the Inclusion Train
Half of the Day She's a Diversity Champion, the Other Half a Rare Disease Mom and Caregiver with Yosr Hamza
A Rare Mama Bear - Being a Single Parent and Adopting a Rare Disease Child with Epidermolysis Bullosa
Effisode - Global Genes RARE Disease Patient Advocacy Summit
Picking the Brain of a Rare Disease Dad - With CTNNB1 Dadvocate - Casey Parks
A Rare Collection - Remember Who You Are
Effisode - Find Your Fairy Godmother
Episode 138 - When Your Child is Facing the Most Severe Form of Human Epilepsy You fight Until the Death - Literally - Chelsea's Hope Lafora Children Research Fund with Niki Markou and Jenifer Merriam
Advancing Therapies for Rare Liver Diseases and Alagille Syndrome with FDA Approved LIVMARLI with Chris Peetz - CEO of Mirum Pharmaceuticals
Effisode - Guilt - Ain't Nobody Got Time for That
The Value of Intensive Therapy for Kids with Disabilities with Jessie Cline and Erin Garrison of Climb Intensive Pediatric Therapy
A Rare Collection - Up At Night
Effisode - RARE Entrepreneur Bootcamp Warriors
The Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease
Effisode - I Don't Like That
Rare Disease Caregiving Post Childhood with Rare Mom and Primary Ciliary Dyskinesia Advocate Karen McEwen
Kelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents
Effisode - Gimme a Break, Spring Break
A Rare Collection - Penny For Your Thoughts
Self Care for Your Healthcare with Ehlers Danlos Patient and Ms. Wheelchair Washington USA - Sarah Tompkins
Effisode - A Perfect Day for a Walk
Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing
Building a Different Kind of Motherhood Experience Than We Had Anticipated with CDKL5 Deficiency Disorder Mom and Founder of Art For Hope Love Cure, Marissa Bishop
Effisode - Grocery Store Answers
A Rare Collection - Unexpected Findings
A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure - Katie Lloyd
Effisode - Moments
Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere
Effisode - The Unicorns - Random Acts of Kindness in the Rare Community
A Rare Collection - This Is Us
How the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and Co-Founder of Hello Sleuth - Sehreen Noor Ali
Effisode - Bathroom Floor Moments
What Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander
One of the Youngest Children to be Given Treatment for Spinal Muscular Atrophy I with Kathryn Alexander
Effisode - Oh Goody - Anxiety is Visiting
Ambiguous Medical Plans - How to Figure Out a System Even When it Seems Impossible with Parvathy Raman Krishnan
A Rare Collection - New Beginnings
Effisode - Rare Disease Day
A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen
ECreate Conversation, Community, and Change with Author of Loving You Big - Leah Moore
Effisode - The Kindness of Strangers
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
A Rare Collection - Lullabies
Effisode - The Magic of Friendship at the North Pole
Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay
The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger
Effisode - Grief and Joy are Mingling this Holiday Season
Turkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives with Tyra Skibington and Tracey Beckett
A Rare Collection - Rare Disease Storytelling - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins
Effisode - Find the Connection
Finding Hope From Diagnosis to Action - LMNA Related Congenital Muscular Dystrophy - Hannah Lowe
The Joy Doesn't Need to be Ambiguous Even Though The Grief is with Rare Merrf Disorder Mom - Jessica Fein
Effisode - Cinderella, Cinderella
Rare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl
Raising a Son with Batten Disease and the Importance of Never Giving Up with Project Sebastian Founder Christopher Velona
Effisode - Two Disabled Dudes
A Rare Collection - Rare Disease Storytelling with Felix Townsin, Erica Jolene Stearns, Brianna Colquitt, and Mahrynn McLaughlin
How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue, and Decision Fatigue with Counselor Rose Reif
Effisode - The Kids Do NAPA Center in Los Angeles
Strength - How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli
Finding Beauty and Connection When Raising a Medically Complex Kiddo with Melanie Dimmitt - Author of Special - Antidotes to the Obsessions that Come with a Child's Disability
EEffisode - Road Trip to NAPA Center
A Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point
Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill
Effisode - Ford Goes to Kindergarten
Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO - Ethan Perlstein
A Mother's Story of Finding Your People, Accepting a Diagnosis and Loving Her Kid for Exactly Who She is with Jordan's Guardian Angels Mom - Carole Bakhos
Effisode - From the Sidelines
Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short
A Rare Collection - Rare Disease Storytelling - Skin In the Game with Adam Johnson, Nathan Peck and Marni Cartelli
Effisode - Rare and Relatable - Rare Disease Stories on Clubhouse with Effie Parks and Bo Bigelow
The 12 Commandments to guide you when you're starting a rare disease patient advocacy group - With Nasha Fitter and Mike Graglia
Leading the World Gene Therapy Program for CTNNB1 With Fellow Rare Mama - Špela Miroševič
Effisode - Your Kids, My Kids - They're All Perfect
Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments
A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff
Effisode - Family Camp, Annoying Brothers, and the Doom of Packing
Mental Health and living with chronic stress with Rare Disease Dad and Psychologist, Al Freedman, Ph.D
Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle
Effisode - Heatwaves and a Happy Birthday
Living with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley
A Rare Collection - Superheroes
Effisode - Making Cents of it All
Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig
Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward
Effisode - Putting the Play in Playground with DadVocate - Casey Parks
Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O'Loughlin
Advocates Come in Small Packages - My Life with Blau Syndrome with Keira Howell
Effisode - Unexpected Moments in the Stairwell
Rare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long
Rare Disease Adoption with Josh and Monica Poynter
Effisode - Empathy Puts Some Pep in Your Step
Rare Disease and Grief - Its Ok That You're Not Ok with Megan Devine
ECreating Space for Mental Health for Men Living with Rare Diseases with David Ross
Effisode - Adventures in the Grocery Store
Media with a Mission with Believe Limited CEO Patrick James Lynch
Top Tips on Advocating For Your Child with Momvocate Kara Karlson
Effisode - Nacho, Nacho Man
AllStripes - Jump Start New Research for Your Rare Disease with Caitlin Nichols
Rare Mom Madeline Cheney - The Rare Life Podcast
Effisode - An Advocate's Elevator Pitch
Rare Disease Mom Chat with Mariah Gillaspie - Lightning and Love Foundation
David Solomon - CEO of Pharnext - A Biopharmaceutical Company
Effisode - The Friendship Circle - Lilly and Ford
The Importance of Early Intervention with Kindering CEO Lisa Greenwald
Accelerating Clinical Research - Harsha Rajasimha, Founder and CEO of Jeeva Informatics
Effisode - Show Your Stripes With Us This Rare Disease Day
Cure VCP With Rare Disease Trailblazer - Nathan Peck
Ben's Friends A Rare Disease Social and Support Platform with Ben Munoz
Effisode - A Child's Imagination
Connecting the Dots From Patients to Researchers with Jason Colquitt - CEO of Across Healthcare
Hippotherapy and Adaptive Riding with Little Bit Therapeutic Riding Center
Effisode - Growth and Smash Cakes
Rare Mama - Nikki McIntosh - Navigating Life with Rare
Beginners Guide to Rare Disease - Anecdotes For Those Early Days of Diagnosis with Daniel DeFabio
Effisode - Never Underestimate the Determination of Your Child
Seth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis
The Life of an Angel Diagnosed with Blau Syndrome with Cheryl-Lynn Townsin
Effisode - The Magic of Christmas
Cookies4Cures with Dana Perella
The Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin
Effisode - Family Dinner
Pediatric Occupational Therapy with OT4Lyfe - Sarah Putt
Effisode - Caregiver Personal Trainer Wanted
Turkey Soup for the Soul
SLC13A5 - TESS Research Foundation with Kim Nye
Effisode - Out with the Ick
Rare Leader - Patricia Weltin, CEO, Beyond the Diagnosis
One Woman’s Kindness Sparks a Neighborhood To Do the Same
Effisode - Friendship, Inclusion, and Tough Conversations
RARE - A Brand With A Purpose With Theresa Thomas and Kristine Hoestermann
Living With Chronic Pain - International Pain Foundation President Barby Ingle
Effisode - Making Friends and Talking About Differences
Adam Johnson - Rare Disease Dad on Mitochondrial Myopathy and Owning Your Story
Truncus Arteriosus - A Rare Form of Congenital Heart Disease with Sonja Voice
Effisode - Merch, Napa Center, and Beach Adventures
Reflecting on 50 Episodes with Effie and Casey
Thanatophoric Skeletal Dysplasia with Ashequka Lacey
Fake It Til You Make It - Public Speaking, Road Trips and Intensive Therapy
What is Chronically Surviving with Marcelle Longlade
Ciitizen - Take Control of Your Own Medical Records and Advance Research with Nasha Fitter
School Busses, Road Trips and Friendship
A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane
Two Disabled Dudes - Kyle Bryant and Sean Baumstark
Rare Together, Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes
Effisode - Let Me Tell You About My Big Brother
A Mother's Crusade to Find a Cure for Her Son - Amber Freed, Founder and CEO, SLC6A1 Connect
David Fajgenbaum - Chasing My Cure - A Doctor's Race to Turn Hope into Action
Effisode 001
WSU ROAR - Responsibility, Opportunities, Advocacy and Respect with Lisa Henniger
Time is Brain - SynGap Research Fund with Mike Graglia
Bonus Episode - Usher Syndrome Type III with Eleanor Griffith from Grey Genetics
Physical and Emotional Well-Being for the Caregiver with Tyra Skibington
Next Steps - A Journey Through CRPS to an Above the Knee Amputee with Whitney Lavender
Rare Like Us with Taylor Kane
Founder of LakiKid - Sensory Tools for Home and Classroom with Jason Hsieh
Anna Laurent on Alagille Syndrome and Her Road to Advocacy
Sage Graves - Estate Planning, Guardianship, Special Needs Trusts
The Ladies Behind the Edits
Loving Large: A Mother's Rare Disease Memoir With Patti Hall
In Loving Memory of Lucas DeFabio
Beyond Quarantine: Acceptance, Empathy, and a Better Normal
Quarantine - What We're Missing, What We're Not, and What We Hope Sticks Around
Trust Your Instincts; An Early Intervention Can Save Your Life
Put Your Own Oxygen Mask On First
Rare Disease Trailblazer and Co-Founder of Disorder - The Rare Disease Film Festival
Therapy Check-In With Rose Reif
How Our Rare Kids Can Shape Us
A Grandfather's Story of Guardianship, Caregiving and Advocacy
Choosing Hope
Mental Health and Coping During Covid-19
School Closures and FAPE
A Healthier Healthcare For All
Morgan's Wonderland
Neena Nizar and the Jansen's Foundation
Distressed Genes Aren't Just A Fashion Statement
The Value of Genetic Counselors
The Lucky Few
Films and Fatherhood
A Fellow CTNNB1 Mama
Sibling Support
My Favorite Pair of Genes
Rollin' With Spina Bifida
My Pfeiffer Pfamily
The Fathers Network
Heartism
A Little Love
The Dadurday Chronicles
It's Your Party, and I'll Cry If I Want To
Telomere More About It
Hospital Hair Don't Care
Effie
Effie and Synthiea
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