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RARECast

RARECast
Gene Therapy
Rare Diseases
Clinical Trials
Rare Disease
FDA
Duchenne Muscular Dystrophy
Global Genes
Genetic Testing
Patient Advocacy
Drug Development
Genetic Counseling
Amyotrophic Lateral Sclerosis
Dravet Syndrome
Rett Syndrome
Prader-Willi Syndrome
Myasthenia Gravis
Tuberous Sclerosis Complex
Spinocerebellar Ataxia
Rare Genetic Diseases
Hyperphagia

RARECast is a Global Genes podcast hosted by award-winning journalist Daniel Levine. It focuses on the intersection of rare disease with business, science, and policy.

PublishesWeeklyEpisodes616Founded12 years ago
Number of ListenersCategory
Business

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Artwork for RARECast

Latest Episodes

ALS is a rapidly progressive neurodegenerative disease in which the loss of motor neurons steadily erodes patients' ability to move, speak, and live independently. Available therapies have had limited impact on disease progression. Coya Therapeutics ... more

After unexplained facial and neck pain escalated into debilitating migraines and widespread symptoms, Monica Dubeau spent 20 months navigating 111 medical appointments with 26 specialists across four states and two countries before receiving a diagno... more

For people with ultra-rare genetic diseases, a diagnosis can come with a devastating realization that there may be no treatment in development because the patient population is too small to attract traditional biopharma investment. Nome is working to... more

Genetic medicine has already begun to transform the treatment of some inherited diseases, but the brain remains one of its most formidable frontiers. For disorders such as Huntington’s disease and ALS, scientists may understand key genetic contributo... more

Key Facts

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Recent Guests

Monica Dubeau
Patient advocate and founder of youmightbeazebra.com
youmightbeazebra.com
Episode: When the Patient Is Left to Connect the Dots
Steven Ringel
Founder and CEO of Nome; founder of the Kazuna Foundation
Nome; Kazuna Foundation
Episode: Enabling Patient Foundations to Build the Next Generation of Genetic Therapies
Per Lundin
Co-founder and CEO, Evox Therapeutics
Evox Therapeutics
Episode: Using Exosomes to Tackle the Delivery Challenge of Genetic Medicines for the Brain
Eric Scheeff
Chief Scientific Officer, co-founder of Idefine; parent of a child with Kleefstra syndrome
Idefine
Episode: Building a Roadmap to Treat a Rare Neurodevelopmental Condition
Julie Raskin
CEO of Congenital Hyperinsulinism International
Congenital Hyperinsulinism International
Episode: The Long Road from the NICU to New Therapies
Doug Love
CEO of Annexon
Annexon
Episode: Stopping Guillain-Barré Syndrome at Its Source
Raza Bokhari
CEO of Medicus Pharma
Medicus Pharma
Episode: From Repeated Surgery to a Precision Patch
Panicos Shangaris
Clinical senior lecturer and consultant in maternal and fetal medicine at King's College London
King's College London
Episode: Curing Sickle Cell Before Life Begins
Allison Foss
Executive Director, Myasthenia Gravis Association
Myasthenia Gravis Association
Episode: Spotting Neuromuscular Red Flags

Host

Daniel Levine
Host of RARECast

Reviews

4.6 out of 5 stars from 21 ratings
  • RareCast was one of the first and few podcasts that were around when I became a parent to a child with a rare disease. Daniel asks amazing questions and draws out all of the great points from his guests. This is one of my educational podcasts about all things rare disease and I have learned so much. Some of them are super over my head so I will listen to them again. Thanks for the great podcast, Daniel and Global Genes.

    Podchaser
    5
    Effie Parks
    5 years ago

Talking Points

Recent interactions between the hosts and their guests.

When the Patient Is Left to Connect the Dots
Q: If you could redesign the diagnostic pathway for someone suspected of having a rare disease from the ground up, what would it look like?
There would be one accountable person overseeing the entire file, ensuring full-picture assessment from first symptom to answer, and a threshold to flag zebra cases so clinicians start looking beyond the horses.
When the Patient Is Left to Connect the Dots
Q: You created youmightbeazebra.com. What gap did you see that existing patient resources weren't addressing?
I wanted a free, comprehensive, patient-centered hub that combines clinician perspectives with lived experience, guiding people through diagnosis and treatment options, and providing curated resources across imaging, specialists, and recovery pathways.
When the Patient Is Left to Connect the Dots
Q: Do you think diagnostic delays are primarily a data problem, an incentive problem or a pattern recognition problem or something else?
I believe the core issue is an incentive problem—short, profitable 15-minute exams discourage deep investigation and pattern recognition, with downstream effects on data collection and awareness of rare diseases.
When the Patient Is Left to Connect the Dots
Q: Let's start with your diagnostic odyssey. How did this begin? What first sent you looking for medical care?
It began with tooth pain and then neck and head pain so severe that I sought dental explanations first, followed by multiple specialists. Over time, the pattern of symptoms and the inability to find a unifying cause led me to track everything like an audit, until the real structural issue—craniospinal instability—was revealed by a digital motion X-ray.
Using Exosomes to Tackle the Delivery Challenge of Genetic Medicines for the Brain
Q: What milestones will validate exosome-enabled gene editing in the CNS, both scientifically and commercially?
Clinical engagement starts with entering the clinic in 2027, followed by target engagement data in 2028 and emerging clinical proof-of-concept, with regulatory interactions ongoing this year and next.

Audience Metrics

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Frequently Asked Questions About RARECast

What is RARECast about and what kind of topics does it cover?

This program covers the business, science, and policy intersections of rare disease, featuring leaders from biotech, pharma, healthcare delivery, patient advocacy, and data/AI-driven solutions. Episodes frequently explore gene therapies, diagnostic advances, multi-stakeholder collaborations, regulatory and reimbursement challenges, and patient access across borders. A notable pattern is the emphasis on real-world impact: patient experiences, advocacy partnerships, and practical pathways to accelerate diagnosis and treatment, often through innovative platform technologies and cross‑sector collaborations. The show tends to attract listeners in biotech and healthcare policy, offering actionable insights for sponsors, researchers, and market st... more

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Which podcasts are similar to RARECast?

These podcasts share a similar audience with RARECast:

1. BioCentury This Week
2. Hidden Brain
3. Fresh Air
4. Planet Money
5. The Daily

How many episodes of RARECast are there?

RARECast launched 12 years ago and published 616 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

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What guests have appeared on RARECast?

Recent guests on RARECast include:

1. Monica Dubeau
2. Steven Ringel
3. Per Lundin
4. Eric Scheeff
5. Julie Raskin
6. Doug Love
7. Raza Bokhari
8. Panicos Shangaris

To view more recent guests and their details, simply upgrade your Rephonic account. You'll also get access to a typical guest profile to help you decide if the show is worth pitching.

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