Best 60 Rare Disease Podcasts

Here is our list of top Rare Disease podcasts you can listen to or contact them for your outreach campaign. Find hosts, booking agents and producers info for each podcast for collaboration.

1. Once Upon A Gene

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

Host

Effie Parks

Producer/Network

Effie Parks

Email

****@ctnnb1.org

Rating

5/5

Reviews

274
Play

2. DNA Today: A Genetics Podcast

DNA Today: A Genetics Podcast

Discover New Advances in the world of genetics, from technology like CRISPR to rare diseases to new research.

Host

Kira Dineen

Producer/Network

Kira Dineen

Email

****@dnatoday.com

Rating

4.7/5

Reviews

151
Play

3. Rare with Flair

Rare with Flair

Casey Cassandra are a pair of best friends with the same rare disease. Their goal is simple: sharing their

Hosts

Casey Greer, Cassandra Mendez

Producer/Network

Casey Greer and Cassandra Mendez

Email

****@rarewithflair.com

Rating

4.9/5

Reviews

84
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4. The Pickle Jar Podcast - Adrenal Insufficiency Podcast

The Pickle Jar Podcast - Adrenal Insufficiency Podcast

The Pickle Jar Podcast is a platform created to educate and advocate for people living with adrenal

Host

Jill Battle

Producer/Network

Jill Battle

Email

****@rogers.com

Rating

5/5

Reviews

24
Play

5. I'm Aware That I'm Rare: the phaware® podcast

I'm Aware That I'm Rare: the phaware® podcast

I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness

Producer/Network

phaware global association

Email

****@phaware.global

Rating

5/5

Reviews

16
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6. Immune Deficiency Foundation

Immune Deficiency Foundation

This podcast is a service of the Immune Deficiency Foundation — a nonprofit organization dedicated to

Producer/Network

Immune Deficiency Foundation

Email

****@primaryimmune.org

Rating

4.8/5

Reviews

27
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7. RARECast

RARECast

RARECast is a Global Genes podcast hosted by award-winning journalist Daniel Levine. It focuses on the

Host

Daniel Levine

Producer/Network

RARECast

Email

****@levinemediagroup.com

Rating

5/5

Reviews

9
Play

8. Sarc Fighter: Living with Sarcoidosis and other rare diseases

Sarc Fighter: Living with Sarcoidosis and other rare diseases

The FSR Sarc Fighter Podcast is about dealing with Sarcoidosis. Whether it's a patient, healthcare provider,

Host

John Carlin

Producer/Network

John Carlin

Email

****@gmail.com

Rating

4.9/5

Reviews

39
Play

9. RARE à l'écoute

RARE à l'écoute

À propos : 'RARE à l'écoute' est un podcast dédié à la sensibilisation aux maladies rares et au soutien

Producer/Network

Pyramidale Communication

Email

****@rarealecoute.com
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10. Rare Disease Discussions

Rare Disease Discussions

News and clinical perspective including CME programs focused on rare diseases. CheckRare focuses on rare and

Producer/Network

Peter Ciszewski, CheckRare

Email

****@biotech5.com

Rating

5/5

Reviews

3
Play

11. The Rare Disease Podcast

The Rare Disease Podcast

Interviews with patients, clinicians, advocates, students, researchers focusing on rare disease in clinical

Host

Lucy McKay

Producer/Network

Medics4RareDiseases

Email

****@m4rd.org

Rating

1/5

Reviews

1
Play

12. Rare Mamas Rising

Rare Mamas Rising

A podcast for mothers of children with rare diseases to find support, advice, community, and hope! Join Rare

Host

Nikki McIntosh

Producer/Network

Nikki McIntosh

Email

****@raremamas.om

Rating

5/5

Reviews

29
Play

13. SYNGAP1 Stories

SYNGAP1 Stories

SYNGAP1-related disorders is a rare disease that affects Ashley Frye's son Nathan and Rainy Schlosser's

Host

Ashley Frye

Producer/Network

SYNGAP1 Podcasts by SRF

Email

****@curesyngap1.org

Rating

5/5

Reviews

20
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14. Few & Far Between: Conversations from the Front Lines of Drug Development

Few & Far Between: Conversations from the Front Lines of Drug Development

Welcome to Few & Far Between! Chris O'Brien, CEO of Biorasi, is your host for Conversations from the

Host

Chris OBrien

Producer/Network

Chris O'Brien

Email

****@biorasi.com

Rating

5/5

Reviews

11
Play

15. P4A Let's Talk Rare: The Life Science Podcast

P4A Let's Talk Rare: The Life Science Podcast

Welcome to P4A Let's Talk Rare, a monthly podcast highlighting the most important developments in the world

Hosts

Georgie Rack, Owen Bryant

Producer/Network

Partners4Access

Email

****@partners4access.com

Rating

4.5/5

Reviews

4
Play

16. Rare on Air

Rare on Air

A EURORDIS-Rare Diseases Europe podcast on the experiences, challenges and successes of people living with

Host

Julien Poulain

Producer/Network

EURORDIS

Email

****@eurordis.org
Play

17. A Rare Reality

A Rare Reality

We are living 'A Rare Reality' and we want to tell you all about it! Join Jordan's Guardian Angels as we

Producer/Network

Jordan's Guardian Angels

Email

****@jordansguardianangels.org

Rating

5/5

Reviews

7
Play

18. Les Invisibles

Les Invisibles

Visibiliser l'Invisible au travers de témoignages uniques et singuliers c'est la vocation première du

Host

Tamara Pellegrini

Producer/Network

Les Invisibles

Email

****@lesinvisibles.ch
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19. Stronger Every Day

Stronger Every Day

I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called

Host

Bo Bigelow

Producer/Network

Bo Bigelow

Email

****@gmail.com

Rating

5/5

Reviews

82

20. Two Disabled Dudes

Two Disabled Dudes

The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan,

Hosts

Kyle Bryant, Sean Baum stark

Producer/Network

The Dudes

Email

****@rideataxia.org

Rating

5/5

Reviews

167
Play

21. Mogil's Mobcast-A Scleroderma Chat

Mogil's Mobcast-A Scleroderma Chat

The goal of my podcast is to have a central place for people afflicted with Scleroderma and a place for their

Host

Ann Mogilevsky

Producer/Network

Ann

Email

****@gmail.com

Rating

5/5

Reviews

64
Play

22. JIMD Podcasts

JIMD Podcasts

JIMD Podcasts is home to the Journal of Inherited Metabolic Disease podcast and the JIMD Shortcast. We're

Host

James Nurse

Producer/Network

Journal of Inherited Metabolic Disease

Email

****@me.com

Rating

5/5

Reviews

8
Play

23. NETWise

NETWise

Being diagnosed with an uncommon cancer like a neuroendocrine tumor (NET) can feel isolating or overwhelming.

Producer/Network

Neuroendocrine Tumor Research Foundation (NETRF)

Email

****@netrf.org

Rating

4.9/5

Reviews

43
Play

24. Foundation Fighting Blindness

Foundation Fighting Blindness

The Foundation Fighting Blindness is the driving force in the global development of treatments and cures for

Host

Ben Shaberman

Producer/Network

Foundation Fighting Blindness

Email

****@gmail.com

Rating

4.9/5

Reviews

19
Play

25. Your Story Our Fight by Lupus LA

Your Story Our Fight by Lupus LA

Lupus LA enters the fastest growing media market with the new Your Story Our Fight® podcast which will give

Host

Adam Selkowitz

Producer/Network

LupusLA

Email

****@lupusla.org

Rating

4.8/5

Reviews

13
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26. BeyondHAE Youth Produced Podcast

BeyondHAE Youth Produced Podcast

The BeyondHAE Podcast is a series dedicated to amplifying the voices of young people affected by Hereditary

Producer/Network

US Hereditary Angioedema Association

Email

****@haea.org

Rating

5/5

Reviews

10
Play

27. Retina UK

Retina UK

Retina UK supports people affected by inherited progressive sight loss and invests in medical research to

Producer/Network

Retina UK

Email

****@retinauk.org.uk
Play

28. MIB Agents OsteoBites and osTEAo

MIB Agents OsteoBites and osTEAo

Each week, MIB Agents talks with the leaders and innovators in osteosarcoma surgery, research, treatment and

Host

Christina Ip-Toma

Producer/Network

MIB Agents Osteosarcoma

Email

****@mibagents.org

Rating

5/5

Reviews

5
Play

29. SMA News & Perspectives

SMA News & Perspectives

Daily, digital coverage of the latest SMA news and perspectives.

Producer/Network

SMA News Today

Rating

5/5

Reviews

5
Play

30. Beyond the Diagnosis

Beyond the Diagnosis

The Beyond the Diagnosis podcast was created by the Histiocytosis Association to give patients, families,

Producer/Network

Histiocytosis Association

Rating

5/5

Reviews

3
Play

31. Real Talk: Eosinophilic Diseases

Real Talk: Eosinophilic Diseases

Eosinophils are a type of white blood cell that play a role in immune responses and help fight off

Producer/Network

American Partnership for Eosinophilic Disorders

Email

****@apfed.org

Rating

4.9/5

Reviews

8
Play

32. NETs Get Real with NCAN

NETs Get Real with NCAN

NCAN has produced conferences for NET patients for over 15 years - conferences that help keep you up to date

Producer/Network

Neuroendocrine Cancer Awareness Network

Email

****@netcancerawareness.org

Rating

3.8/5

Reviews

4
Play

33. Heart to Heart with Anna

Heart to Heart with Anna

Revitalize your spirit and connect with the vibrant congenital heart defect (CHD) community through 'Heart to

Host

Anna Jaworski

Producer/Network

HUG Podcast Network

Email

****@hearttoheartwithanna.com

Rating

4.4/5

Reviews

17
Play

34. The Rare Life

The Rare Life

This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests,

Host

Madeline Cheney

Producer/Network

Madeline Cheney

Email

****@mightiestmamas.org

Rating

5/5

Reviews

139
Play

35. Hope and Help For Fatigue & Chronic Illness

Hope and Help For Fatigue & Chronic Illness

Welcome to the Hope and Help for Fatigue and Chronic Illness Podcast. It's our mission to help people that

Producer/Network

Institute for Neuro-Immune Medicine

Email

****@gmail.com

Rating

4.9/5

Reviews

135
Play

36. Living With Cystic Fibrosis

Living With Cystic Fibrosis

Living with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire

Host

Laura Bonnell

Producer/Network

Laura Bonnell

Email

****@cbsradio.com

Rating

4.7/5

Reviews

20
Play

37. Talk Fragile X

Talk Fragile X

Talk Fragile X Podcast exists to provide a platform for families and Fragile X experts to share their

Host

Nicole Smith

Producer/Network

Talk Fragile X

Email

****@fragilex.org

Rating

5/5

Reviews

15
Play

38. Major Pain

Major Pain

The Major Pain podcast is a collection of interviews from people living with chronic illness and disability.

Host

Jesse Mercury

Producer/Network

Jesse Mercury

Email

****@gmail.com

Rating

4.8/5

Reviews

46
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39. Glioblastoma aka GBM

Glioblastoma aka GBM

Glioblastoma aka GBM is a podcast by the Glioblastoma Research Organization that highlights the stories of

Host

Amber Barbach

Producer/Network

Amber Barbach

Email

****@gbmresearch.org

Rating

5/5

Reviews

23
Play

40. PeerView Neuroscience & Psychiatry CME/CNE/CPE Audio Podcast

PeerView Neuroscience & Psychiatry CME/CNE/CPE Audio Podcast

PeerView (PVI) is a leading provider of high-quality, innovative continuing education (CME/CE/CPE and MOC)

Producer/Network

PeerView

Email

****@peer-education.com

Rating

4.3/5

Reviews

10
Play

41. It Happened To Me: A Rare Disease and Medical Challenges Podcast

It Happened To Me: A Rare Disease and Medical Challenges Podcast

The mission of our podcast is to support you, our listeners and to create community, as you confront the

Hosts

Cathy Gildenhorn, Beth Glassman

Producer/Network

Cathy Gildenhorn, Beth Glassman, and Kira Dineen (DNA Today)

Email

****@gmail.com

Rating

4.9/5

Reviews

35
Play

42. Lupus Science and Medicine Podcast

Lupus Science and Medicine Podcast

The Lupus Science & Medicine® podcast is your premier source for the latest insights and developments in

Host

Dr. Anna Wolska

Producer/Network

BMJ Podcasts

Email

****@bmj.com

Rating

4/5

Reviews

15
Play

43. Hacking Hypermobility

Hacking Hypermobility

Hi! We're Luna and Shelli, also known as The Two Bendy Mommas. We talk about the lived experience of those

Hosts

Luna, Shelli Stanley

Producer/Network

Two Bendy Mommas

Email

****@hackinghypermobility.com

Rating

5/5

Reviews

14
Play

44. Neuroendocrine Cancer UK - Not Just NE Cancer Podcast

Neuroendocrine Cancer UK - Not Just NE Cancer Podcast

Real life experiences, practical advice and everything in between. Whether you are diagnosed with

Producer/Network

Neuroendocrine Cancer UK

Email

****@nc-uk.org

Rating

5/5

Reviews

1
Play

45. CReATe Podcast

CReATe Podcast

CReATe Connect podcasts are short recorded interviews on topics we hope will be of interest to patients with

Producer/Network

CReATe Consortium

Rating

5/5

Reviews

4
Play

46. Destroy Duchenne Podcast

Destroy Duchenne Podcast

A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular

Producer/Network

Destroy Duchenne Podcast

Email

****@destroyduchenne.org

Rating

5/5

Reviews

11
Play

47. PeerVoice Brain & Behaviour Video

PeerVoice Brain & Behaviour Video

PeerVoice is an independent, professional medical publishing concern focused on gathering and reporting

Producer/Network

PeerVoice

Email

****@peer-education.com

48. ABCs of NMOSD

ABCs of NMOSD

ABCs of NMOSD brings together the latest information and research about all things NMOSD, from diagnosis and

Producer/Network

Siegel Rare Neuroimmune Association (SRNA)

Email

****@wearesrna.org

Rating

5/5

Reviews

6
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49. Uncommon Lungs: Perspectives From the CF Community

Uncommon Lungs: Perspectives From the CF Community

Everyone's experience with cystic fibrosis (CF) is unique. Listen along as different individuals in the

Producer/Network

Everyday CF by Vertex Pharmaceuticals

Rating

5/5

Reviews

9
Play

50. PeerVoice Brain & Behaviour Audio

PeerVoice Brain & Behaviour Audio

PeerVoice is an independent, professional medical publishing concern focused on gathering and reporting

Producer/Network

PeerVoice

Email

****@peer-education.com
Play

51. Confessions of a Rare Disease Mama

Confessions of a Rare Disease Mama

Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but

Host

Jillian Arnold

Producer/Network

Jillian Arnold

Email

****@gmail.com

Rating

5/5

Reviews

49
Play

52. Help 4 HD Live!

Help 4 HD Live!

Welcome to Help 4 HD Live! We are proud to broadcast credible information and education to the Huntington's

Producer/Network

Help4HD

Email

****@help4hd.org

Rating

5/5

Reviews

11
Play

53. collectively coeXisting

collectively coeXisting

Explore the untold stories of females impacted by X-linked conditions. Hosted by Emma Bliss and Taylor Kane

Hosts

Emma Bliss, Taylor Kane

Producer/Network

Remember The Girls

Email

****@gmail.com

Rating

5/5

Reviews

1
Play

54. Alexander Disease Research Update

Alexander Disease Research Update

Monthly discussion of recent publications from the research literature on Alexander Disease, hosted by Albee

Host

Albee Messing

Producer/Network

Albee Messing

Email

****@wisc.edu

Rating

4/5

Reviews

1
Play

55. Radio Rare

Radio Rare

Radio Rare is a podcast where we share the stories of those in and around the rare and less common cancer

Producer/Network

Rare Cancers Australia

Email

****@rarecancers.org.au
Play

56. Susan Hendrix My Story Living With Lupus

Susan Hendrix My Story Living With Lupus

Susan Hendrix is a lupus survivor who has achieved a great deal while dealing with this chronic illness. She

Host

Susan Hendrix

Producer/Network

Susan Hendrix My Story Living

Email

****@gmail.com

Rating

2.8/5

Reviews

9
Play

57. Follicular Lymphoma CancerCare Connect Education Workshops

Follicular Lymphoma CancerCare Connect Education Workshops

CancerCare's free Connect Education Workshops are a way for people to learn about cancer-related issues

Producer/Network

CancerCare

Email

****@cancercare.org

Rating

5/5

Reviews

1
Play

58. Waldenstrom's Macroglobulinemia CancerCare Connect Education Workshops

Waldenstrom's Macroglobulinemia CancerCare Connect Education Workshops

CancerCare's free Connect Education Workshops are a way for people to learn about cancer-related issues from

Producer/Network

CancerCare

Email

****@cancercare.org

Rating

5/5

Reviews

1
Play

59. The Positive Twist - a podcast about dystonia

The Positive Twist - a podcast about dystonia

The Positive Twist is a podcast about the third most common movement disorder, dystonia. In every episode we

Producer/Network

Dystonia Europe

Email

****@dystonia-europe.org

Rating

5/5

Reviews

1
Play