All Episodes
Raising Rare — 104 episodes
Embracing the Suck - A Parent and Physician's Journey with Rare Disease
Summertime...It's Different for Us
Jessica Patay - Offering a Lifeline
100th EPISODE A New Season, A New Era
Leaving a Legacy - Sanath Kumar Ramesh
Rare Men, Rare Wellness – David Hogan
Plans Change. Dreams Shift. - Mariah Swanson
Rare Mamas: THE Field Guide for Navigating Your Child’s Rare Disease
Shaped by the Journey – Claudia Parker
Missing Pieces in the Pain Management Puzzle
Big Sister at Ronald McDonald House
This is a Love Story - Jessica Fein
One Christmas Without Knowing
Relentless Demands, Relentless Advocacy
It Has Been a Minute... Or Two
The Importance and Power of Taking A Break (Season Finale)
Complicated
Wes Michael: Dedicated to Amplifying the Rare Patient Voice
Coming Together for a Cure - Blake Benton Part 2
A Bold and Courageous Approach - Coming Together For A Cure
Find Your Real Friends in Your Rare Disease Community
This Is Who These Rare Kiddos Are
What have we learned in the last 6 months?
Myles Was Here To Teach Us
One Day You Will be on the Other Side
Finding Purpose in All of It
We all handle life (and our diagnoses) differently
They won’t be children forever: the transition from pediatric to adult care
Creating Connections in a Fragmented Landscape
Revisiting Moments
Other end of the tunnel: True reality of hope is effort
A new year, a new season. Glad to be back!
Season 4 Finale
Never Give Up. Mistakes will lead you to discoveries
What if we could reduce the stress of caregiving?
Update from Dillion Loomis-Head: There’s always one more step
Terry Pirovolakis: Three Years Later, An update from one of our earliest guests
Hope is a prerequisite for Action
empoweredtogether.us
How high is the real cost?
Give Yourself More Grace
Who cares for the caregivers?
Cystinosis Awareness Day is May 7th
Patrick Girondi: Rags to Riches to Rondone
Twin Genetics One Diagnosis
Susan Geoghegan - Caregiver to Caregiver
Jamas LaFreniere - Corn Starch, Quality of life, and the importance of an Umbrella
Welcome to Season 4
Raising Rare Anonymous?
On the Ground at Global Genes 2022
Casey McPherson: Making Music and Drugs for Rare Disease
Episode FIFTY. Birthday FOUR. Patients UNCOUNTED.
Comparing Notes: Transitions Are A Constant in Rare Disease
Virtual Hugs: Empowerment, Optimism, Hope and Lifelong Connections
All Newborns. All Rare Diseases. Project GUARDIAN.
Mike Hu – Two Boys. One Diagnosis. We can do better.
Everleigh: SETD5 Clouds Our Rainbow and Sunshine Baby
Ask Me Anything
Surprising Repurposing of an Asthma Drug
Season 3 Premier - Surprising Progress During Our Break
True Fear, New Perspectives
Sifting Through Too Many Options
Unveiling High-Throughput Screening Results
Real Progress in the Search for a Treatment
MIllions of Families... One Rare Disease Story
The Disorder Dads (Part 2): Daniel DeFabio’s Surprisingly Grateful Response
The Disorder Dads (Part 1): Bo Bigelow's Story
There Is No Such Thing As A Simple Cold
Living Proof: Terry and Billy Ellsworth - Part 2
Brave Pioneers in DMD Terri And Billy Ellsworth - Part 1
The Unseen and Indirect Costs of Raising a Rare Child
Breaking Down the Rare Disease Medical Bills
Nicole Horvath: A Life of Outliving Cystic Fibrosis Expectations
Introducing Open Treatments: Making Rare Disease Research More Accessible
It's Not Humanly Possible Revisited
More Than You Can Handle (Part 2)
More Than You Can Handle (Part 1)
Turn Up the Volume - Raghav Gets a Cochlear Implant
Parents Lifting Heavy Cars …There Is No Other Choice
Effie Parks, The power of laughter, podcasts, and passive friendships
Rare Mamas Part 2: Nikki McIntosh Moving from Distress to Prowess
Rare Mamas Part 1: Nikki McIntosh and Ramya On Choosing Hope
Terry Pirovolakis: A Fellow Dad Raising Funds for His Son (Part 2)
Terry Pirovolakis: A Fellow Dad Fighting for His Son (Part 1)
Dr. Ethan Perlstein Discusses Drug Repurposing for Rare Diseases
Rare Together Watch Together: A Night Of Tears, Smiles, And Reflection
Anticipation: Experimental Drug Offers Hope
When Unrelenting Stress Meets The Relentless Parent (Part 3)
Leaders in the Club Nobody Wanted to Join (Part 2)
No Search Results. A Fellow Traveler’s Relentless Pursuit of a Cure (Part 1)
Deep Gratitude
Learning His Language
Difficult Decisions
It's just not humanly possible
We Need Decisions that Lead to Therapies for GPX4
Managing the Day With a Child With a Rare Disease
The First GPX4 Conference Ever (Part 1)
SPECIAL: IMPACT OF COVID-19 ON THE QUEST FOR A CURE FOR BABY RAGHAV
Finding Help in the Land of (Intellectual) Giants
Hope. Action. Strength. Hope.
Meet Raghav's Mom
We Are Not Alone on This Climb
Connecting the Dots of Life
Introducing Raising Rare