The Disorder Channel’s Top 19 Rare Disease Podcasts

Stronger Every Day by D:RDFF co-director Bo Bigelow. In more than 300 weeks he’s never missed a week posting a podcast about his daughter Tess facing Hao-Fountain Syndrome / USP7.
Rare Cast hosted by Danny Levine for Global Genes.
Once Upon a Gene by Effie Parks, a zebra mom who interviews other folks facing rare. Now also a TV talk show on The Disorder Channel.
Unfixed podcast from Kimberly Warner and Martel Catalano. About chronic illness (often rare). Several Unfixed short films are also available on The Disorder Channel.
Raising Rare from Sanath Kumar Ramesh and Kevin Freiert about Sanath’s son and their quest to cure GPX4
Rare in Common from Cambridge Bio, hosted by Andra Stratton, this podcast is an outgrowth of their amazing film of the same name. 19 episodes to date. 20-40 minutes each.
Unlocking Bryson’s Brain by Keith MacArthur from the CBC
The Rare Life - with host Madeline Cheney, a rare mom interviewing other rare families and offering tips to cope.
Wild Type - stories of siblings to kids with SYNGAP1
Two Disabled Dudes with Kyle and Sean on Ataxia and other rare diseases. 40-60 minutes. 118 episodes to date.
Dad to Dad podcast for dads raising kids with rare or other special needs. 30-60 minute episodes. 115 episodes to date.
Bloodstream podcast with Patrick Lynch and Amy Board primarily on hemophilia but branching into other rare too.
My Rare Disease - hosted by Katy Baker, a 23 year old with a rare disease, she interviews others facing rare.
NORDpod - with host Matthew Zachary
DNA Today by Kira Dineen has over 100 episodes to date.
Orange Socks hosted by Dr. Gerald Nebeker. He visits most interviewees in person in their homes to discuss their journeys with rare diseases.
Rare Mamas - SMA mom Nikki McIntosh hosts. The film on her son Miles “Life and Atrophy” is streaming on The Disorder Channel now.
SYNGAP10 Podcast - Mike Graglia hosts a 10 minute look at what’s happening in SYNGAP research.
Courageous Parents Network podcast - about 30 episodes to date dealing with palliative care, anticipatory grief and other concerns for rare and fatal conditions in children.

More Podcasts worth a listen:

I Care for Rare: A podcast hosted by Sandra Markus for people living with rare diseases in Ontario.

Insightful Moments: My VIBE: Hosted by Paula Orandash from PTC Therapeutics - real-life stories and experiences from the rare disease community.

P4A Let’s Talk Rare: The Life Science Podcast: hosted by Georgie Rack and Owen Bryant of Partners For Access. - developments in the world of rare diseases, orphan drug, cell and gene therapy,

Live Life Rare: hosted by Stephen V. Smith - myasthenia gravis

Patient Empowerment Program: A Rare Disease Podcast: hosted by Dr. Stanley T. Crooke of n-lorem. - nano-rare diseases

Check Rare hosted by Peter Ciszewski

Parents as Rare - hosted by Dadvocate Adam Johnson for Mito Action
Few and Far Between - hosted by Chris O'Brien
Being Rare hosted by Sarita Edwards

The State of Health with Gunnar Esiason

R is for Rare hosted by Annie Watson a young adult with narcolepsy.
RARING hosted by Matthew Zachary
National MPS Society: Our Voices hosted by Jason Madison

The Rare Disorder Podcast hosted by Shivani Vyas. 21 episodes to date.
Atypical Truth hosted by Erica Stearns, a disabled adult, and proud mother of two young children who share the same rare genetic disease.
A Rare Reality from Jordan’s Guardian Angels, hosted by Christina James.
Brave Together hosted by by Jessica Patay, mother to a 17-year-old son with Prader-Willi syndrome, her focus is on special needs families which may not always also be rare disease
Because We are Strong by Theresa Thomas and Kristine Hoestermann
Rare Disease Connection from Aspect Health with Genetic Counselor Jessica

My Rare Disease with Katy Baker a young adult with Scimitar Syndrome
Go Shout Love podcast - more than 75 episodes to date.
Rare with Flair with hosts Casey and Cassandra two twenty-somethings with HPS

Openly Rare with Paul Kidwell. Great interviews with those facing rare diseases. Five episodes of about 40 minutes each.

Two Rare Mama Bears, Hosts Megan Meyer and Matty Manley have a mission to cure CMD. 44 episodes to date. 20-60 minutes each.

1 in 20000 aka Rare Lives a podcast from India (but in English) hosted by Avantika Shrivastava. ~19 episodes to date.
Rare Unplugged by Ann Bruns and Seth Rotberg. About 8 episodes 30-45 minutes each.
Wait, How Do You Spell That? A Rare Disease Podcast from Patient Worthy
Rare Disease Connection - each 40+ minute episode focuses on a particular rare disease
Health Innovation Matters podcast hosted by Logan, about 25 episodes to date so far just 2 dealing with Rare diseases.
This Podcast Will Kill You hosted by the two Erins, Erin Allmann Updyke, PhD and Erin Welsh, PhD. They make hard science seem easy and fun. They cover infectious diseases so they only deal with rare disease when it intersects with infectious disease, eg. CF, or Creutzfeldt-Jakob disease.
Who Lives Like This?! podcast hosted by Jason Lehmbeck and Elizabeth Aquino about special needs families.
Patient Stories podcast from Grey Genetics.
CF Community Voices from CFRI is a video podcast series on Cystic Fibrosis.
Patient Paradox - rare interviews hosted by Mark Sleeper who has CF.
Our Hidden Stories podcast deal with special needs and disabilities (not always rare disease related).
Changing Your Dreams: Parenting a Child with Special Needs - not 100% on rare disease but the anticipatory grief angle will resonate with rare parents.
Rare Voices from Optime Care hosted by Donovan Quill