Once Upon A Gene
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A Rare Collection - Lullabies
26 mins; December 16, 2021
Effisode - The Magic of Friendship at the North Pole
6 mins; December 14, 2021
Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay
46 mins; December 09, 2021
The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger
34 mins; December 02, 2021
Effisode - Grief and Joy are Mingling this Holiday Season
7 mins; November 30, 2021
Turkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives with Tyra Skibington and Tracey Beckett
44 mins; November 25, 2021
A Rare Collection - Rare Disease Storytelling - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins
13 mins; November 18, 2021
Effisode - Find the Connection
5 mins; November 16, 2021
Finding Hope From Diagnosis to Action - LMNA Related Congenital Muscular Dystrophy - Hannah Lowe
31 mins; November 11, 2021
The Joy Doesn't Need to be Ambiguous Even Though The Grief is with Rare Merrf Disorder Mom - Jessica Fein
40 mins; November 04, 2021
Effisode - Cinderella, Cinderella
4 mins; November 02, 2021
Rare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl
44 mins; October 28, 2021
Raising a Son with Batten Disease and the Importance of Never Giving Up with Project Sebastian Founder Christopher Velona
40 mins; October 21, 2021
Effisode - Two Disabled Dudes
40 mins; October 19, 2021
A Rare Collection - Rare Disease Storytelling with Felix Townsin, Erica Jolene Stearns, Brianna Colquitt, and Mahrynn McLaughlin
21 mins; October 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
41 mins; October 07, 2021
Effisode - The Kids Do NAPA Center in Los Angeles
4 mins; October 05, 2021
Strength - How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli
34 mins; September 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
46 mins; September 23, 2021
Effisode - Road Trip to NAPA Center
4 mins; September 21, 2021
A Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point
24 mins; September 16, 2021
Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill
33 mins; September 09, 2021
Effisode - Ford Goes to Kindergarten
4 mins; September 07, 2021
Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO - Ethan Perlstein
42 mins; September 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
33 mins; August 26, 2021
Effisode - From the Sidelines
6 mins; August 24, 2021
Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short
27 mins; August 19, 2021
A Rare Collection - Rare Disease Storytelling - Skin In the Game with Adam Johnson, Nathan Peck and Marni Cartelli
17 mins; August 12, 2021
Effisode - Rare and Relatable - Rare Disease Stories on Clubhouse with Effie Parks and Bo Bigelow
4 mins; August 10, 2021
The 12 Commandments to guide you when you're starting a rare disease patient advocacy group - With Nasha Fitter and Mike Graglia
48 mins; August 05, 2021
Leading the World Gene Therapy Program for CTNNB1 With Fellow Rare Mama - Špela Miroševič
39 mins; July 29, 2021
Effisode - Your Kids, My Kids - They're All Perfect
5 mins; July 27, 2021
Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments
28 mins; July 22, 2021
A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff
18 mins; July 15, 2021
Effisode - Family Camp, Annoying Brothers, and the Doom of Packing
4 mins; July 13, 2021
Mental Health and living with chronic stress with Rare Disease Dad and Psychologist Al Freedman, Ph.D
50 mins; July 08, 2021
Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle
32 mins; July 01, 2021
Effisode - Heatwaves and a Happy Birthday
5 mins; June 29, 2021
Living with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley
34 mins; June 24, 2021
A Rare Collection - Superheroes
18 mins; June 17, 2021
Effisode - Making Cents of it All
6 mins; June 15, 2021
Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig
36 mins; June 10, 2021
Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward
30 mins; June 03, 2021
Effisode - Putting the Play in Playground with DadVocate - Casey Parks
7 mins; June 01, 2021
Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O'Loughlin
57 mins; May 27, 2021
Advocates Come in Small Packages - My Life with Blau Syndrome with Keira Howell
20 mins; May 20, 2021
Effisode - Unexpected Moments in the Stairwell
5 mins; May 18, 2021
Rare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long
40 mins; May 13, 2021
Rare Disease Adoption with Josh and Monica Poynter
27 mins; May 06, 2021
Effisode - Empathy Puts Some Pep in Your Step
7 mins; May 04, 2021
Rare Disease and Grief - Its Ok That You're Not Ok with Megan Devine
62 hours 42 mins; April 29, 2021
Creating Space for Mental Health for Men Living with Rare Diseases with David Ross
27 mins; April 22, 2021
Effisode - Adventures in the Grocery Store
10 mins; April 20, 2021
Media with a Mission with Believe Limited CEO Patrick James Lynch
40 mins; April 15, 2021
Top Tips on Advocating For Your Child with Momvocate Kara Karlson
23 mins; April 08, 2021
Top Tips on Advocating For Your Child with Momvocate Kara Karlson
23 mins; April 08, 2021
Effisode - Nacho, Nacho Man
6 mins; April 06, 2021
Effisode - Nacho, Nacho Man
6 mins; April 06, 2021
AllStripes - Jump Start New Research for Your Rare Disease with Caitlin Nichols
26 mins; April 01, 2021
Chondrodysplasia Punctata X-Linked Type 1 With Rare Mom Madeline Cheney
32 mins; March 25, 2021
Effisode - An Advocate's Elevator Pitch
5 mins; March 23, 2021
Rare Disease Mom Chat with Mariah Gillaspie - Lightning and Love Foundation
29 mins; March 18, 2021
David Solomon - CEO of Pharnext - A Biopharmaceutical Company
20 mins; March 11, 2021
Effisode - The Friendship Circle - Lilly and Ford
5 mins; March 09, 2021
The Importance of Early Intervention with Kindering CEO Lisa Greenwald
27 mins; March 04, 2021
Accelerating Clinical Research - Harsha Rajasimha, Founder and CEO of Jeeva Informatics
28 mins; February 25, 2021
Accelerating Clinical Research - Harsha Rajasimha, Founder and CEO of Jeeva Informatics
28 mins; February 25, 2021
Effisode - Show Your Stripes With Us This Rare Disease Day
5 mins; February 23, 2021
Cure VCP With Rare Disease Trailblazer - Nathan Peck
28 mins; February 18, 2021
Ben's Friends A Rare Disease Social and Support Platform with Ben Munoz
21 mins; February 11, 2021
Effisode - A Child's Imagination
4 mins; February 09, 2021
Connecting the Dots From Patients to Researchers with Jason Colquitt - CEO of Across Healthcare
25 mins; February 04, 2021
Hippotherapy and Adaptive Riding with Little Bit Therapeutic Riding Center
26 mins; January 28, 2021
Effisode - Growth and Smash Cakes
6 mins; January 26, 2021
Rare Mama - Nikki McIntosh - Navigating Life with Rare
25 mins; January 21, 2021
Beginners Guide to Rare Disease - Anecdotes For Those Early Days of Diagnosis with Daniel DeFabio
45 mins; January 14, 2021
Effisode - Never Underestimate the Determination of Your Child
10 mins; January 12, 2021
Seth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis
37 mins; January 07, 2021
The Life of an Angel Diagnosed with Blau Syndrome with Cheryl-Lynn Townsin
52 mins; December 31, 2020
Effisode - The Magic of Christmas
7 mins; December 29, 2020
Cookies4Cures with Dana Perella
19 mins; December 24, 2020
The Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin
53 mins; December 17, 2020
Effisode - Family Dinner
7 mins; December 15, 2020
Pediatric Occupational Therapy with OT4Lyfe - Sarah Putt
51 mins; December 10, 2020
Effisode - Caregiver Personal Trainer Wanted
7 mins; December 01, 2020
Turkey Soup for the Soul
41 mins; November 26, 2020
SLC13A5 - TESS Research Foundation with Kim Nye
47 mins; November 19, 2020
Effisode - Out with the Ick
5 mins; November 17, 2020
Rare Leader - Patricia Weltin, CEO, Beyond the Diagnosis
31 mins; November 12, 2020
One Woman’s Kindness Sparks a Neighborhood To Do the Same
20 mins; November 05, 2020
Effisode - Friendship, Inclusion, and Tough Conversations
8 mins; November 03, 2020
RARE - A Brand With A Purpose With Theresa Thomas and Kristine Hoestermann
29 mins; October 29, 2020
Living With Chronic Pain - International Pain Foundation President Barby Ingle
38 mins; October 22, 2020
Effisode - Making Friends and Talking About Differences
6 mins; October 20, 2020
Adam Johnson - Rare Disease Dad on Mitochondrial Myopathy and Owning Your Story
42 mins; October 15, 2020
Truncus Arteriosus - A Rare Form of Congenital Heart Disease with Sonja Voice
37 mins; October 08, 2020
Effisode - Merch, Napa Center, and Beach Adventures
6 mins; October 06, 2020
Reflecting on 50 Episodes with Effie and Casey
18 mins; October 01, 2020
Thanatophoric Skeletal Dysplasia with Ashequka Lacey
35 mins; September 24, 2020
Fake It Til You Make It - Public Speaking, Road Trips and Intensive Therapy
4 mins; September 22, 2020