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Once Upon A Gene

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping - Schuetz

Published: Nov. 9, 2023, noon
Duration: 44 minutes 20 seconds

Listed in: Culture

Palliative Care & the Courageous Parent Network with Founder Blyth Lord

Published: Nov. 4, 2023, 1:34 p.m.
Duration: 40 minutes 45 seconds

Listed in: Culture

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

Published: Nov. 4, 2023, 1:33 p.m.
Duration: 42 minutes 11 seconds

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These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio

Published: Oct. 19, 2023, 11 a.m.
Duration: 1 hour 27 seconds

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Utilizing Child Life Specialists - Empowering Rare Disease and Medically Complex Families in Hospitals Nationwide with Child Life On Call Founder - Katie Taylor

Published: Oct. 12, 2023, 11 a.m.
Duration: 32 minutes 45 seconds

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Navigating Parenthood as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network

Published: Sept. 21, 2023, 11 a.m.
Duration: 45 minutes 36 seconds

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Effisode - The Unconventional Toothfairy

Published: Sept. 19, 2023, 11 a.m.
Duration: 4 minutes 58 seconds

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Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody

Published: Sept. 14, 2023, 11 a.m.
Duration: 43 minutes 42 seconds

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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

Published: Sept. 7, 2023, 11 a.m.
Duration: 47 minutes 38 seconds

Listed in: Culture

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

Published: June 22, 2023, 11 a.m.
Duration: 24 minutes 22 seconds

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A Rare Collection - A Father's Day Special - Amidst the Storm

Published: June 15, 2023, 11 a.m.
Duration: 17 minutes 28 seconds

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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

Published: June 8, 2023, 11 a.m.
Duration: 39 minutes 18 seconds

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Developing Personalized Therapeutics for Ultra Rare Patients with La Jolla Labs CEO Jeff Milton

Published: June 1, 2023, 11 a.m.
Duration: 37 minutes 35 seconds

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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

Published: May 25, 2023, 11 a.m.
Duration: 43 minutes 33 seconds

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Effisode - Are We The Actors

Published: May 23, 2023, 11 a.m.
Duration: 5 minutes 19 seconds

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A Rare Collection - Keep Digging

Published: May 18, 2023, 11 a.m.
Duration: 18 minutes 33 seconds

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The Trexo Robot and the Many Benefits of this Technology for Kids with Disabilities with the Founder and CEO Manmeet Maggu

Published: May 11, 2023, 11 a.m.
Duration: 36 minutes 59 seconds

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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

Published: May 4, 2023, 11 a.m.
Duration: 39 minutes 53 seconds

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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

Published: April 27, 2023, 11 a.m.
Duration: 51 minutes 7 seconds

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A Rare Collection - Wishing Well

Published: April 20, 2023, 11 a.m.
Duration: 15 minutes 20 seconds

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Effisode - The Ultimate Rare Disease Resource Guide

Published: April 18, 2023, 11 a.m.
Duration: 4 minutes 36 seconds

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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

Published: April 14, 2023, 1:13 a.m.
Duration: 47 minutes 59 seconds

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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

Published: April 6, 2023, 11 a.m.
Duration: 42 minutes 21 seconds

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Effisode - There's No Crying In Baseball

Published: April 4, 2023, 11 a.m.
Duration: 4 minutes 58 seconds

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Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael

Published: March 30, 2023, 11 a.m.
Duration: 20 minutes 12 seconds

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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

Published: March 9, 2023, 5:31 p.m.
Duration: 38 minutes 25 seconds

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Love, Hope and Cure SYNGAP

Published: Feb. 28, 2023, 11 a.m.
Duration: 1 hour 47 minutes 34 seconds

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Every Patient Matters - Discovering, Developing, and Providing Experimental ASO Treatments to Nano-Rare Patients for Free with n-Lorem Founder and CEO Stan Crooke

Published: Feb. 23, 2023, noon
Duration: 39 minutes 30 seconds

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Effisode - Rare Disease Day Events

Published: Feb. 22, 2023, 1:32 a.m.
Duration: 4 minutes 40 seconds

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A Rare Collection - To the Moon and Back

Published: Feb. 16, 2023, noon
Duration: 22 minutes 51 seconds

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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

Published: Feb. 9, 2023, noon
Duration: 26 minutes 34 seconds

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Effisode - Barbara Is Real

Published: Feb. 7, 2023, noon
Duration: 4 minutes 46 seconds

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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

Published: Feb. 2, 2023, noon
Duration: 28 minutes 22 seconds

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Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella

Published: Jan. 26, 2023, noon
Duration: 53 minutes 2 seconds

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A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD

Published: Dec. 22, 2022, noon
Duration: 36 minutes 9 seconds

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A Rare Collection - Holiday Cheer

Published: Dec. 15, 2022, noon
Duration: 18 minutes 7 seconds

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Effisode - Presents, Portraits and Beyond the Diagnosis

Published: Dec. 13, 2022, noon
Duration: 3 minutes 52 seconds

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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

Published: Dec. 8, 2022, noon
Duration: 38 minutes 51 seconds

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How Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson

Published: Dec. 1, 2022, noon
Duration: 44 minutes 26 seconds

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Effisode - Fire and Ice

Published: Nov. 29, 2022, noon
Duration: 9 minutes 2 seconds

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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

Published: Nov. 24, 2022, noon
Duration: 38 minutes 12 seconds

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Social Security Disability Revealed - Why It's So Hard to Access Benefits and What You Can Do About It with Spencer Bishins

Published: Nov. 3, 2022, 11 a.m.
Duration: 52 minutes 13 seconds

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Effisode - Chasing Greenlights

Published: Nov. 1, 2022, 11 a.m.
Duration: 4 minutes 45 seconds

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Medical Student - Urvi Gupta Joins the Global Genes Rare Compassion Program with Alexions Patient Advocacy Champion Wendy Erler

Published: Oct. 27, 2022, 11 a.m.
Duration: 22 minutes 8 seconds

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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

Published: Oct. 20, 2022, 11 a.m.
Duration: 42 minutes 52 seconds

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Effisode - Gravity

Published: Oct. 18, 2022, 11 a.m.
Duration: 4 minutes 51 seconds

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A Rare Collection - Batten Down the Hatches

Published: Oct. 13, 2022, 11 a.m.
Duration: 15 minutes 28 seconds

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CRELD1 Dadvocate Paying the Ultimate Price - Seeking Diagnosis for His Two Children, and Raising Awareness with Adam Clatworthy

Published: Oct. 6, 2022, 11 a.m.
Duration: 49 minutes 39 seconds

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Effisode - Gilmore Girls, Pumpkin Spice, and Baja

Published: Oct. 4, 2022, 11 a.m.
Duration: 3 minutes 15 seconds

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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

Published: Sept. 29, 2022, 11 a.m.
Duration: 30 minutes 29 seconds

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Rare Disease Families Have Plenty of Hope - What They Need is Help. Transforming Drug Development w/ NF2 Biosolutions, Nicole Henwood & Vibe Bio, Alok Tayi

Published: Sept. 1, 2022, 11 a.m.
Duration: 38 minutes 49 seconds

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Together We Can Cure Single-Gene Disorders Starting with PGAP3 - Moonshot - An Ambitious and Innovative Project with Geri and Zach Landman

Published: Aug. 25, 2022, 11 a.m.
Duration: 42 minutes 48 seconds

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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

Published: Aug. 4, 2022, 11 a.m.
Duration: 34 minutes 45 seconds

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Ensuring that the Patient and Caregiver Voice are Part of Clinical Trial Design and Engagement - Bridging the Gap with Industry with Shazia Ahmad

Published: July 28, 2022, 11 a.m.
Duration: 29 minutes 48 seconds

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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

Published: June 9, 2022, 11 a.m.
Duration: 36 minutes 28 seconds

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Advancing Therapies for Rare Liver Diseases and Alagille Syndrome with FDA Approved LIVMARLI with Chris Peetz - CEO of Mirum Pharmaceuticals

Published: June 2, 2022, 11 a.m.
Duration: 31 minutes 13 seconds

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Effisode - Guilt - Ain't Nobody Got Time for That

Published: May 31, 2022, 1:30 p.m.
Duration: 3 minutes 29 seconds

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The Value of Intensive Therapy for Kids with Disabilities with Jessie Cline and Erin Garrison of Climb Intensive Pediatric Therapy

Published: May 26, 2022, 11 a.m.
Duration: 35 minutes 22 seconds

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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

Published: May 5, 2022, 11 a.m.
Duration: 40 minutes 52 seconds

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Sisters Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing

Published: March 31, 2022, 11 a.m.
Duration: 33 minutes 28 seconds

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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

Published: March 24, 2022, 11 a.m.
Duration: 40 minutes 24 seconds

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Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere

Published: March 3, 2022, noon
Duration: 38 minutes 44 seconds

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Effisode - The Unicorns - Random Acts of Kindness in the Rare Community

Published: Feb. 22, 2022, noon
Duration: 5 minutes 4 seconds

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A Rare Collection - This Is Us

Published: Feb. 17, 2022, noon
Duration: 22 minutes 59 seconds

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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

Published: Feb. 10, 2022, noon
Duration: 32 minutes 36 seconds

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Effisode - Bathroom Floor Moments

Published: Feb. 8, 2022, noon
Duration: 6 minutes 25 seconds

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What Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander

Published: Feb. 3, 2022, noon
Duration: 34 minutes 40 seconds

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The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman

Published: Dec. 23, 2021, noon
Duration: 46 minutes 33 seconds

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Turkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives with Tyra Skibington and Tracey Beckett

Published: Nov. 25, 2021, noon
Duration: 44 minutes 14 seconds

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A Rare Collection - Rare Disease Storytelling - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins

Published: Nov. 18, 2021, noon
Duration: 13 minutes 40 seconds

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Raising a Son with Batten Disease and the Importance of Never Giving Up with Project Sebastian Founder Christopher Velona

Published: Oct. 21, 2021, 11 a.m.
Duration: 40 minutes 2 seconds

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Effisode - Two Disabled Dudes

Published: Oct. 19, 2021, 11 a.m.
Duration: 40 minutes 56 seconds

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A Rare Collection - Rare Disease Storytelling with Felix Townsin, Erica Jolene Stearns, Brianna Colquitt, and Mahrynn McLaughlin

Published: Oct. 14, 2021, 11 a.m.
Duration: 21 minutes 36 seconds

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How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue, and Decision Fatigue with Counselor Rose Reif

Published: Oct. 7, 2021, 11 a.m.
Duration: 41 minutes 15 seconds

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Effisode - The Kids Do NAPA Center in Los Angeles

Published: Oct. 5, 2021, 11 a.m.
Duration: 4 minutes 26 seconds

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Strength - How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli

Published: Sept. 30, 2021, 11 a.m.
Duration: 34 minutes 35 seconds

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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

Published: Sept. 23, 2021, 11 a.m.
Duration: 46 minutes 48 seconds

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Effisode - Road Trip to NAPA Center

Published: Sept. 21, 2021, 11 a.m.
Duration: 4 minutes 54 seconds

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A Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point

Published: Sept. 16, 2021, 11 a.m.
Duration: 24 minutes 32 seconds

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Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill

Published: Sept. 9, 2021, 11 a.m.
Duration: 33 minutes 26 seconds

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Effisode - Ford Goes to Kindergarten

Published: Sept. 7, 2021, 11 a.m.
Duration: 4 minutes 36 seconds

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Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO - Ethan Perlstein

Published: Sept. 2, 2021, 11 a.m.
Duration: 42 minutes 40 seconds

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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

Published: Aug. 26, 2021, 11 a.m.
Duration: 33 minutes 12 seconds

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The 12 Commandments to guide you when you're starting a rare disease patient advocacy group - With Nasha Fitter and Mike Graglia

Published: Aug. 5, 2021, 11 a.m.
Duration: 48 minutes 59 seconds

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