All episodes
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