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Episode | Date |
---|---|
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
|
Apr 25, 2024 |
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
|
Apr 18, 2024 |
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
|
Apr 11, 2024 |
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
|
Apr 04, 2024 |
Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio
|
Mar 28, 2024 |
Krabbe Disease with Kasey Feldt
|
Mar 21, 2024 |
BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
|
Mar 14, 2024 |
A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
|
Mar 07, 2024 |
Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini
|
Feb 29, 2024 |
James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
|
Feb 22, 2024 |
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
|
Feb 15, 2024 |
Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
|
Feb 08, 2024 |
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
|
Feb 01, 2024 |
Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
|
Jan 25, 2024 |
Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford
|
Jan 18, 2024 |
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
|
Jan 11, 2024 |
Finding Strength In Every Step
|
Jan 08, 2024 |
Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin
|
Dec 21, 2023 |
The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia
|
Dec 14, 2023 |
GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka
|
Dec 08, 2023 |
A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies
|
Nov 30, 2023 |
Turkey Soup for the Soul
|
Nov 23, 2023 |
Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhD
|
Nov 16, 2023 |
Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping - Schuetz
|
Nov 09, 2023 |
Palliative Care & the Courageous Parent Network with Founder Blyth Lord
|
Nov 04, 2023 |
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
|
Nov 04, 2023 |
Mastering the Art of the Supermarket Answer When Someone Asks, How Are You with Jennifer Siedman
|
Nov 02, 2023 |
From Heartbreak to Hope - With CEO of Parent Project Muscular Dystrophy, Pat Furlong
|
Oct 26, 2023 |
Effisode - The Irony of it All
|
Oct 24, 2023 |
These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio
|
Oct 19, 2023 |
Utilizing Child Life Specialists - Empowering Rare Disease and Medically Complex Families in Hospitals Nationwide with Child Life On Call Founder - Katie Taylor
|
Oct 12, 2023 |
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
|
Oct 05, 2023 |
Effisode - 2023 SynGAP Cannonball for a Cure
|
Oct 03, 2023 |
Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens
|
Sep 28, 2023 |
Navigating Parenthood as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network
|
Sep 21, 2023 |
Effisode - The Unconventional Toothfairy
|
Sep 19, 2023 |
Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody
|
Sep 14, 2023 |
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
|
Sep 07, 2023 |
Effisode - Summer Camp for Medically Complex Kids
|
Sep 05, 2023 |
A Rare Collection - Schools Out for the Summer
|
Jul 27, 2023 |
Anecdotes From a Rare Disease Dad of an Adult Son with NR4A2 with Joe Henry
|
Jul 20, 2023 |
A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber
|
Jul 13, 2023 |
Claudia Gonzaga Jauregui
|
Jul 06, 2023 |
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
|
Jun 22, 2023 |
A Rare Collection - A Father's Day Special - Amidst the Storm
|
Jun 15, 2023 |
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
|
Jun 08, 2023 |
Developing Personalized Therapeutics for Ultra Rare Patients with La Jolla Labs CEO Jeff Milton
|
Jun 01, 2023 |
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
|
May 25, 2023 |
Effisode - Are We The Actors
|
May 23, 2023 |
A Rare Collection - Keep Digging
|
May 18, 2023 |
The Tréxō Robot and the Many Benefits of this Technology for Kids with Disabilities with the Founder and CEO Manmeet Maggu
|
May 11, 2023 |
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
|
May 04, 2023 |
A Rare Collection - Wishing Well
|
Apr 20, 2023 |
Effisode - The Ultimate Rare Disease Resource Guide
|
Apr 18, 2023 |
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
|
Apr 14, 2023 |
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
|
Apr 06, 2023 |
Effisode - There's No Crying In Baseball
|
Apr 04, 2023 |
Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael
|
Mar 30, 2023 |
Take Part Founders and PYROXD-1 Parents - Matt and Maria Granados
|
Mar 23, 2023 |
Effisode - Wheelchairs and Walls
|
Mar 21, 2023 |
A Rare Collection - Exhausted and Energized
|
Mar 16, 2023 |
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
|
Mar 09, 2023 |
Love, Hope and Cure SYNGAP
|
Feb 28, 2023 |
Every Patient Matters - Discovering, Developing, and Providing Experimental ASO Treatments to Nano-Rare Patients for Free with n-Lorem Founder and CEO Stan Crooke
|
Feb 23, 2023 |
Effisode - Rare Disease Day Events
|
Feb 22, 2023 |
A Rare Collection - To the Moon and Back
|
Feb 16, 2023 |
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
|
Feb 09, 2023 |
Effisode - Barbara Is Real
|
Feb 07, 2023 |
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
|
Feb 02, 2023 |
Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella
|
Jan 26, 2023 |
Effisode - Seizures Are Stupid
|
Jan 24, 2023 |
A Rare Collection - New Beginnings
|
Jan 19, 2023 |
Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO Dadvocate Andrés Treviño
|
Jan 12, 2023 |
Effisode - The Friendship Circle
|
Jan 10, 2023 |
Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel
|
Jan 05, 2023 |
Care Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer
|
Dec 29, 2022 |
Effisode - Rare Disease Day 2023
|
Dec 27, 2022 |
A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD
|
Dec 22, 2022 |
A Rare Collection - Holiday Cheer
|
Dec 15, 2022 |
Effisode - Presents, Portraits and Beyond the Diagnosis
|
Dec 13, 2022 |
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
|
Dec 08, 2022 |
How Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson
|
Dec 01, 2022 |
Effisode - Fire and Ice
|
Nov 29, 2022 |
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
|
Nov 24, 2022 |
A Rare Collection - Beep, Beep, Beep
|
Nov 17, 2022 |
Effisode - The List
|
Nov 15, 2022 |
A Mom's Advocacy For Her Son Who Has Hemophilia B Led to Her Own Diagnosis - With Stormy Johnson
|
Nov 10, 2022 |
Social Security Disability Revealed - Why It's So Hard to Access Benefits and What You Can Do About It with Spencer Bishins
|
Nov 03, 2022 |
Effisode - Chasing Greenlights
|
Nov 01, 2022 |
Medical Student - Urvi Gupta Joins the Global Genes Rare Compassion Program with Alexions Patient Advocacy Champion Wendy Erler
|
Oct 27, 2022 |
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
|
Oct 20, 2022 |
Effisode - Gravity
|
Oct 18, 2022 |
A Rare Collection - Batten Down the Hatches
|
Oct 13, 2022 |
CRELD1 Dadvocate Paying the Ultimate Price - Seeking Diagnosis for His Two Children, and Raising Awareness with Adam Clatworthy
|
Oct 06, 2022 |
Effisode - Gilmore Girls, Pumpkin Spice, and Baja
|
Oct 04, 2022 |
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
|
Sep 29, 2022 |
Improving Inclusion Practices in Schools with the Inclusive Educator - Bre Gastaldi
|
Sep 22, 2022 |
Effisode - Shake It Off
|
Sep 20, 2022 |
A Rare Collection - Underestimated
|
Sep 15, 2022 |
Rare Friends Forever - Hanging Out and Showing Some Love to Brene Brown with Katie Lloyd and Adam Johnson
|
Sep 08, 2022 |
Effisode - Inclusion Revolution
|
Sep 06, 2022 |
Rare Disease Families Have Plenty of Hope - What They Need is Help. Transforming Drug Development w/ NF2 Biosolutions, Nicole Henwood & Vibe Bio, Alok Tayi
|
Sep 01, 2022 |
Together We Can Cure Single-Gene Disorders Starting with PGAP3 - Moonshot - An Ambitious and Innovative Project with Geri and Zach Landman
|
Aug 25, 2022 |
Effisode - Montana or Bust
|
Aug 23, 2022 |
Rare Disease Siblings, The Glass House Children - Bulletproof and Shattered - With SMA Sibling Cara Freedman
|
Aug 18, 2022 |
A Rare Collection - Easier Said Than Done
|
Aug 11, 2022 |
Effisode - The Lunchboxes
|
Aug 09, 2022 |
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
|
Aug 04, 2022 |
Ensuring that the Patient and Caregiver Voice are Part of Clinical Trial Design and Engagement - Bridging the Gap with Industry with Shazia Ahmad
|
Jul 28, 2022 |
Effisode - CTNNB1 Awareness Day - Rare Disease Family Meet-Up
|
Jul 26, 2022 |
Summer Surfing - Get On Top of the IEP Wave - Things You Can Do This Summer to Make Next Year Better with Gay Grossman
|
Jul 21, 2022 |
A Rare Collection - I Will Never Forget
|
Jul 14, 2022 |
Effisode - Back on Track - All Aboard the Inclusion Train
|
Jul 12, 2022 |
Half of the Day She's a Diversity Champion, the Other Half a Rare Disease Mom and Caregiver with Yosr Hamza
|
Jul 07, 2022 |
A Rare Mama Bear - Being a Single Parent and Adopting a Rare Disease Child with Epidermolysis Bullosa
|
Jun 30, 2022 |
Effisode - Global Genes RARE Disease Patient Advocacy Summit
|
Jun 28, 2022 |
Picking the Brain of a Rare Disease Dad - With CTNNB1 Dadvocate - Casey Parks
|
Jun 23, 2022 |
A Rare Collection - Remember Who You Are
|
Jun 16, 2022 |
Effisode - Find Your Fairy Godmother
|
Jun 14, 2022 |
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
|
Jun 09, 2022 |
Advancing Therapies for Rare Liver Diseases and Alagille Syndrome with FDA Approved LIVMARLI with Chris Peetz - CEO of Mirum Pharmaceuticals
|
Jun 02, 2022 |
Effisode - Guilt - Ain't Nobody Got Time for That
|
May 31, 2022 |
The Value of Intensive Therapy for Kids with Disabilities with Jessie Cline and Erin Garrison of Climb Intensive Pediatric Therapy
|
May 26, 2022 |
A Rare Collection - Up At Night
|
May 19, 2022 |
Effisode - RARE Entrepreneur Bootcamp Warriors
|
May 17, 2022 |
The Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease
|
May 12, 2022 |
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
|
May 05, 2022 |
Effisode - I Don't Like That
|
May 03, 2022 |
Rare Disease Caregiving Post Childhood with Rare Mom and Primary Ciliary Dyskinesia Advocate Karen McEwen
|
Apr 28, 2022 |
Kelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents
|
Apr 21, 2022 |
Effisode - Gimme a Break, Spring Break
|
Apr 19, 2022 |
A Rare Collection - Penny For Your Thoughts
|
Apr 14, 2022 |
Self Care for Your Healthcare with Ehlers Danlos Patient and Ms. Wheelchair Washington USA - Sarah Tompkins
|
Apr 07, 2022 |
Effisode - A Perfect Day for a Walk
|
Apr 05, 2022 |
Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing
|
Mar 31, 2022 |
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
|
Mar 24, 2022 |
Effisode - Grocery Store Answers
|
Mar 22, 2022 |
A Rare Collection - Unexpected Findings
|
Mar 17, 2022 |
A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure - Katie Lloyd
|
Mar 10, 2022 |
Effisode - Moments
|
Mar 08, 2022 |
Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere
|
Mar 03, 2022 |
Effisode - The Unicorns - Random Acts of Kindness in the Rare Community
|
Feb 22, 2022 |
A Rare Collection - This Is Us
|
Feb 17, 2022 |
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
|
Feb 10, 2022 |
Effisode - Bathroom Floor Moments
|
Feb 08, 2022 |
What Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander
|
Feb 03, 2022 |
One of the Youngest Children to be Given Treatment for Spinal Muscular Atrophy I with Kathryn Alexander
|
Jan 27, 2022 |
Effisode - Oh Goody - Anxiety is Visiting
|
Jan 25, 2022 |
Ambiguous Medical Plans - How to Figure Out a System Even When it Seems Impossible with Parvathy Raman Krishnan
|
Jan 20, 2022 |
A Rare Collection - New Beginnings
|
Jan 13, 2022 |
Effisode - Rare Disease Day
|
Jan 11, 2022 |
A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen
|
Jan 06, 2022 |
Create Conversation, Community, and Change with Author of Loving You Big - Leah Moore
|
Dec 30, 2021 |
Effisode - The Kindness of Strangers
|
Dec 28, 2021 |
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
|
Dec 23, 2021 |
A Rare Collection - Lullabies
|
Dec 16, 2021 |
Effisode - The Magic of Friendship at the North Pole
|
Dec 14, 2021 |
Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay
|
Dec 09, 2021 |
The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger
|
Dec 02, 2021 |
Effisode - Grief and Joy are Mingling this Holiday Season
|
Nov 30, 2021 |
Turkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives with Tyra Skibington and Tracey Beckett
|
Nov 25, 2021 |
A Rare Collection - Rare Disease Storytelling - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins
|
Nov 18, 2021 |
Effisode - Find the Connection
|
Nov 16, 2021 |
Finding Hope From Diagnosis to Action - LMNA Related Congenital Muscular Dystrophy - Hannah Lowe
|
Nov 11, 2021 |
The Joy Doesn't Need to be Ambiguous Even Though The Grief is with Rare Merrf Disorder Mom - Jessica Fein
|
Nov 04, 2021 |
Effisode - Cinderella, Cinderella
|
Nov 02, 2021 |
Rare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl
|
Oct 28, 2021 |
Raising a Son with Batten Disease and the Importance of Never Giving Up with Project Sebastian Founder Christopher Velona
|
Oct 21, 2021 |
Effisode - Two Disabled Dudes
|
Oct 19, 2021 |
A Rare Collection - Rare Disease Storytelling with Felix Townsin, Erica Jolene Stearns, Brianna Colquitt, and Mahrynn McLaughlin
|
Oct 14, 2021 |
How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue, and Decision Fatigue with Counselor Rose Reif
|
Oct 07, 2021 |
Effisode - The Kids Do NAPA Center in Los Angeles
|
Oct 05, 2021 |
Strength - How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli
|
Sep 30, 2021 |
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
|
Sep 23, 2021 |
Effisode - Road Trip to NAPA Center
|
Sep 21, 2021 |
A Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point
|
Sep 16, 2021 |
Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill
|
Sep 09, 2021 |
Effisode - Ford Goes to Kindergarten
|
Sep 07, 2021 |
Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO - Ethan Perlstein
|
Sep 02, 2021 |
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
|
Aug 26, 2021 |
Effisode - From the Sidelines
|
Aug 24, 2021 |
Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short
|
Aug 19, 2021 |
A Rare Collection - Rare Disease Storytelling - Skin In the Game with Adam Johnson, Nathan Peck and Marni Cartelli
|
Aug 12, 2021 |
Effisode - Rare and Relatable - Rare Disease Stories on Clubhouse with Effie Parks and Bo Bigelow
|
Aug 10, 2021 |
The 12 Commandments to guide you when you're starting a rare disease patient advocacy group - With Nasha Fitter and Mike Graglia
|
Aug 05, 2021 |
Leading the World Gene Therapy Program for CTNNB1 With Fellow Rare Mama - Špela Miroševič
|
Jul 29, 2021 |
Effisode - Your Kids, My Kids - They're All Perfect
|
Jul 27, 2021 |
Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments
|
Jul 22, 2021 |
A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff
|
Jul 15, 2021 |
Effisode - Family Camp, Annoying Brothers, and the Doom of Packing
|
Jul 13, 2021 |
Mental Health and living with chronic stress with Rare Disease Dad and Psychologist, Al Freedman, Ph.D
|
Jul 08, 2021 |
Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle
|
Jul 01, 2021 |
Effisode - Heatwaves and a Happy Birthday
|
Jun 29, 2021 |
Living with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley
|
Jun 24, 2021 |
A Rare Collection - Superheroes
|
Jun 17, 2021 |
Effisode - Making Cents of it All
|
Jun 15, 2021 |
Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig
|
Jun 10, 2021 |
Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward
|
Jun 03, 2021 |
Effisode - Putting the Play in Playground with DadVocate - Casey Parks
|
Jun 01, 2021 |
Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O'Loughlin
|
May 27, 2021 |
Advocates Come in Small Packages - My Life with Blau Syndrome with Keira Howell
|
May 20, 2021 |
Effisode - Unexpected Moments in the Stairwell
|
May 18, 2021 |
Rare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long
|
May 13, 2021 |
Rare Disease Adoption with Josh and Monica Poynter
|
May 06, 2021 |
Effisode - Empathy Puts Some Pep in Your Step
|
May 04, 2021 |
Rare Disease and Grief - Its Ok That You're Not Ok with Megan Devine
|
Apr 29, 2021 |
Creating Space for Mental Health for Men Living with Rare Diseases with David Ross
|
Apr 22, 2021 |
Effisode - Adventures in the Grocery Store
|
Apr 20, 2021 |
Media with a Mission with Believe Limited CEO Patrick James Lynch
|
Apr 15, 2021 |
Top Tips on Advocating For Your Child with Momvocate Kara Karlson
|
Apr 08, 2021 |
Effisode - Nacho, Nacho Man
|
Apr 06, 2021 |
AllStripes - Jump Start New Research for Your Rare Disease with Caitlin Nichols
|
Apr 01, 2021 |
Rare Mom Madeline Cheney - The Rare Life Podcast
|
Mar 25, 2021 |
Effisode - An Advocate's Elevator Pitch
|
Mar 23, 2021 |
Rare Disease Mom Chat with Mariah Gillaspie - Lightning and Love Foundation
|
Mar 18, 2021 |
David Solomon - CEO of Pharnext - A Biopharmaceutical Company
|
Mar 11, 2021 |
Effisode - The Friendship Circle - Lilly and Ford
|
Mar 09, 2021 |
The Importance of Early Intervention with Kindering CEO Lisa Greenwald
|
Mar 04, 2021 |
Accelerating Clinical Research - Harsha Rajasimha, Founder and CEO of Jeeva Informatics
|
Feb 25, 2021 |
Effisode - Show Your Stripes With Us This Rare Disease Day
|
Feb 23, 2021 |
Cure VCP With Rare Disease Trailblazer - Nathan Peck
|
Feb 18, 2021 |
Ben's Friends A Rare Disease Social and Support Platform with Ben Munoz
|
Feb 11, 2021 |
Effisode - A Child's Imagination
|
Feb 09, 2021 |
Connecting the Dots From Patients to Researchers with Jason Colquitt - CEO of Across Healthcare
|
Feb 04, 2021 |
Hippotherapy and Adaptive Riding with Little Bit Therapeutic Riding Center
|
Jan 28, 2021 |
Effisode - Growth and Smash Cakes
|
Jan 26, 2021 |
Rare Mama - Nikki McIntosh - Navigating Life with Rare
|
Jan 21, 2021 |
Beginners Guide to Rare Disease - Anecdotes For Those Early Days of Diagnosis with Daniel DeFabio
|
Jan 14, 2021 |
Effisode - Never Underestimate the Determination of Your Child
|
Jan 12, 2021 |
Seth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis
|
Jan 07, 2021 |
The Life of an Angel Diagnosed with Blau Syndrome with Cheryl-Lynn Townsin
|
Dec 31, 2020 |
Effisode - The Magic of Christmas
|
Dec 29, 2020 |
Cookies4Cures with Dana Perella
|
Dec 24, 2020 |
The Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin
|
Dec 17, 2020 |
Effisode - Family Dinner
|
Dec 15, 2020 |
Pediatric Occupational Therapy with OT4Lyfe - Sarah Putt
|
Dec 10, 2020 |
Effisode - Caregiver Personal Trainer Wanted
|
Dec 01, 2020 |
Turkey Soup for the Soul
|
Nov 26, 2020 |
Effisode - Out with the Ick
|
Nov 17, 2020 |
Effisode - Friendship, Inclusion, and Tough Conversations
|
Nov 03, 2020 |
Living With Chronic Pain - International Pain Foundation President Barby Ingle
|
Oct 22, 2020 |
Effisode - Making Friends and Talking About Differences
|
Oct 20, 2020 |
Effisode - Merch, Napa Center, and Beach Adventures
|
Oct 06, 2020 |
Reflecting on 50 Episodes with Effie and Casey
|
Oct 01, 2020 |
Thanatophoric Skeletal Dysplasia with Ashequka Lacey
|
Sep 24, 2020 |
Fake It Til You Make It - Public Speaking, Road Trips and Intensive Therapy
|
Sep 22, 2020 |
What is Chronically Surviving with Marcelle Longlade
|
Sep 17, 2020 |
Ciitizen - Take Control of Your Own Medical Records and Advance Research with Nasha Fitter
|
Sep 10, 2020 |
School Busses, Road Trips and Friendship
|
Sep 08, 2020 |
A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane
|
Sep 03, 2020 |
Two Disabled Dudes - Kyle Bryant and Sean Baumstark
|
Aug 27, 2020 |
Rare Together, Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes
|
Aug 26, 2020 |
Effisode - Let Me Tell You About My Big Brother
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Aug 25, 2020 |
A Mother's Crusade to Find a Cure for Her Son - Amber Freed, Founder and CEO, SLC6A1 Connect
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Aug 20, 2020 |
David Fajgenbaum - Chasing My Cure - A Doctor's Race to Turn Hope into Action
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Aug 13, 2020 |
Effisode 001
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Aug 11, 2020 |
WSU ROAR - Responsibility, Opportunities, Advocacy and Respect with Lisa Henniger
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Aug 06, 2020 |
Time is Brain - SynGap Research Fund with Mike Graglia
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Jul 30, 2020 |
Bonus Episode - Usher Syndrome Type III with Eleanor Griffith from Grey Genetics
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Jul 27, 2020 |
Physical and Emotional Well-Being for the Caregiver with Tyra Skibington
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Jul 23, 2020 |
Next Steps - A Journey Through CRPS to an Above the Knee Amputee with Whitney Lavender
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Jul 16, 2020 |
Rare Like Us with Taylor Kane
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Jul 09, 2020 |
Founder of LakiKid - Sensory Tools for Home and Classroom with Jason Hsieh
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Jul 02, 2020 |
Anna Laurent on Alagille Syndrome and Her Road to Advocacy
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Jun 25, 2020 |
Sage Graves - Estate Planning, Guardianship, Special Needs Trusts
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Jun 18, 2020 |
The Ladies Behind the Edits
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Jun 11, 2020 |
Loving Large: A Mother's Rare Disease Memoir With Patti Hall
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Jun 08, 2020 |
In Loving Memory of Lucas DeFabio
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Jun 07, 2020 |
Beyond Quarantine: Acceptance, Empathy, and a Better Normal
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May 28, 2020 |
Quarantine - What We're Missing, What We're Not, and What We Hope Sticks Around
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May 21, 2020 |
Trust Your Instincts; An Early Intervention Can Save Your Life
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May 14, 2020 |
Put Your Own Oxygen Mask On First
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May 07, 2020 |
Rare Disease Trailblazer and Co-Founder of Disorder - The Rare Disease Film Festival
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Apr 30, 2020 |
Therapy Check-In With Rose Reif
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Apr 23, 2020 |
How Our Rare Kids Can Shape Us
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Apr 16, 2020 |
A Grandfather's Story of Guardianship, Caregiving and Advocacy
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Apr 09, 2020 |
Choosing Hope
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Apr 02, 2020 |
Mental Health and Coping During Covid-19
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Mar 26, 2020 |
School Closures and FAPE
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Mar 19, 2020 |
A Healthier Healthcare For All
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Mar 12, 2020 |
Morgan's Wonderland
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Mar 05, 2020 |
Neena Nizar and the Jansen's Foundation
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Feb 27, 2020 |
Distressed Genes Aren't Just A Fashion Statement
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Feb 20, 2020 |
The Value of Genetic Counselors
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Feb 13, 2020 |
The Lucky Few
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Feb 06, 2020 |
Films and Fatherhood
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Jan 30, 2020 |
A Fellow CTNNB1 Mama
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Jan 23, 2020 |
Sibling Support
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Jan 16, 2020 |
My Favorite Pair of Genes
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Jan 09, 2020 |
Rollin' With Spina Bifida
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Jan 02, 2020 |
My Pfeiffer Pfamily
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Dec 26, 2019 |
The Fathers Network
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Dec 19, 2019 |
Heartism
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Dec 12, 2019 |
A Little Love
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Dec 05, 2019 |
The Dadurday Chronicles
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Nov 28, 2019 |
It's Your Party, and I'll Cry If I Want To
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Nov 21, 2019 |
Telomere More About It
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Nov 14, 2019 |
Hospital Hair Don't Care
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Nov 07, 2019 |
Effie
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Oct 28, 2019 |
Effie and Synthiea
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Oct 28, 2019 |
Trailer
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Oct 28, 2019 |