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🎧Podcast
🎧Effie Parks
Effisode - Rare Disease Day Events
Effisode - Rare Disease Day Events
Release Date:
2023-02-22 10:32:44
Intro music by Scott Holmes
Effisode - Rare Disease Day Events
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Title
Effisode - Rare Disease Day Events
Copyright
Effie Parks
Release Date
2023-02-22 10:32:44
flashback
2024-06-06
The Power of Genetic Diagnosis - More Than Just a Label
2024-05-23
Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick
2024-05-16
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
2024-05-09
Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum
2024-04-25
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
2024-04-18
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
2024-04-12
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
2024-04-04
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
2024-03-28
Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio
2024-03-21
Krabbe Disease with Kasey Feldt
2024-03-14
BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
2024-03-07
A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
2024-02-29
Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini
2024-02-22
James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
2024-02-15
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
2024-02-08
Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
2024-02-01
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
2024-01-25
Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
2024-01-18
Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford
2024-01-11
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
2024-01-08
Finding Strength In Every Step
2023-12-21
Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin
2023-12-14
The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia
2023-12-08
GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka
2023-11-30
A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies
2023-11-23
Turkey Soup for the Soul
2023-11-16
Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhD
2023-11-09
Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping - Schuetz
2023-11-04
Palliative Care & the Courageous Parent Network with Founder Blyth Lord
2023-11-04
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
2023-11-02
Mastering the Art of the Supermarket Answer When Someone Asks, How Are You with Jennifer Siedman
2023-10-26
From Heartbreak to Hope - With CEO of Parent Project Muscular Dystrophy, Pat Furlong
2023-10-24
Effisode - The Irony of it All
2023-10-19
These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio
2023-10-12
Utilizing Child Life Specialists - Empowering Rare Disease and Medically Complex Families in Hospitals Nationwide with Child Life On Call Founder - Katie Taylor
2023-10-05
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
2023-10-03
Effisode - 2023 SynGAP Cannonball for a Cure
2023-09-28
Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens
2023-09-21
Navigating Parenthood as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network
2023-09-19
Effisode - The Unconventional Toothfairy
2023-09-14
Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody
2023-09-07
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
2023-09-05
Effisode - Summer Camp for Medically Complex Kids
2023-07-27
A Rare Collection - Schools Out for the Summer
2023-07-20
Anecdotes From a Rare Disease Dad of an Adult Son with NR4A2 with Joe Henry
2023-07-13
A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber
2023-07-06
Claudia Gonzaga Jauregui
2023-06-22
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
2023-06-15
A Rare Collection - A Father's Day Special - Amidst the Storm
2023-06-08
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
2023-06-01
Developing Personalized Therapeutics for Ultra Rare Patients with La Jolla Labs CEO Jeff Milton
2023-05-25
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
2023-05-23
Effisode - Are We The Actors
2023-05-18
A Rare Collection - Keep Digging
2023-05-11
The Tréxō Robot and the Many Benefits of this Technology for Kids with Disabilities with the Founder and CEO Manmeet Maggu
2023-05-04
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
2023-04-20
A Rare Collection - Wishing Well
2023-04-18
Effisode - The Ultimate Rare Disease Resource Guide
2023-04-14
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
2023-04-06
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
2023-04-04
Effisode - There's No Crying In Baseball
2023-03-30
Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael
2023-03-23
Take Part Founders and PYROXD-1 Parents - Matt and Maria Granados
2023-03-21
Effisode - Wheelchairs and Walls
2023-03-16
A Rare Collection - Exhausted and Energized
2023-03-10
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
2023-02-28
Love, Hope and Cure SYNGAP
2023-02-23
Every Patient Matters - Discovering, Developing, and Providing Experimental ASO Treatments to Nano-Rare Patients for Free with n-Lorem Founder and CEO Stan Crooke
2023-02-22
Effisode - Rare Disease Day Events
2023-02-16
A Rare Collection - To the Moon and Back
2023-02-09
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
2023-02-07
Effisode - Barbara Is Real
2023-02-02
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
2023-01-26
Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella
2023-01-25
Effisode - Seizures Are Stupid
2023-01-19
A Rare Collection - New Beginnings
2023-01-12
Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO Dadvocate Andrés Treviño
2023-01-10
Effisode - The Friendship Circle
2023-01-05
Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel
2022-12-29
Care Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer
2022-12-27
Effisode - Rare Disease Day 2023
2022-12-22
A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD
2022-12-15
A Rare Collection - Holiday Cheer
2022-12-13
Effisode - Presents, Portraits and Beyond the Diagnosis
2022-12-08
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
2022-12-01
How Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson
2022-11-29
Effisode - Fire and Ice
2022-11-24
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
2022-11-17
A Rare Collection - Beep, Beep, Beep
2022-11-15
Effisode - The List
2022-11-10
A Mom's Advocacy For Her Son Who Has Hemophilia B Led to Her Own Diagnosis - With Stormy Johnson
2022-11-03
Social Security Disability Revealed - Why It's So Hard to Access Benefits and What You Can Do About It with Spencer Bishins
2022-11-01
Effisode - Chasing Greenlights
2022-10-27
Medical Student - Urvi Gupta Joins the Global Genes Rare Compassion Program with Alexions Patient Advocacy Champion Wendy Erler
2022-10-20
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
2022-10-18
Effisode - Gravity
2022-10-13
A Rare Collection - Batten Down the Hatches
2022-10-06
CRELD1 Dadvocate Paying the Ultimate Price - Seeking Diagnosis for His Two Children, and Raising Awareness with Adam Clatworthy
2022-10-04
Effisode - Gilmore Girls, Pumpkin Spice, and Baja
2022-09-29
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