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RARECast

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

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.

PublishesWeeklyEpisodes604Founded12 years ago
Number of ListenersCategory
Business

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Artwork for RARECast

Latest Episodes

People with rare, severe autoimmune diseases often live for years with progressive, disabling conditions managed by chronic immunosuppression that rarely addresses the underlying cause. Kyverna is developing an autologous CAR T-cell therapy designed ... more

The case of baby KJ Muldoon, an infant born with a lethal genetic metabolic disorder, demonstrates the potential to compress years of therapeutic development into months using an in vivo base editing approach. Jeff Coller, director of the Johns Hopki... more

Families seeking a diagnosis for a rare disease often face a protracted diagnostic odyssey that can include ER visits, specialist referrals, and dead ends, even at world-class medical centers. Parents bounce from doctor to doctor while payers absorb ... more

Erythropoietic protoporphyria (EPP) is a rare, inherited metabolic disorder that triggers a toxic photochemical reaction in skin when exposed to light. A short time in the sun for someone with the condition can result in excruciating, second-degree–l... more

Key Facts

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Recent Guests

Craig Leppert
EPP patient advocate, founder of Shadow Jumpers
Shadow Jumpers / EPP community
Episode: Emerging from a Life in the Shadows
Miquel Vila-Perello
CEO of SpliceBio
SpliceBio
Episode: Fitting Big Genes into Small Vectors
David Stamler
CEO of Alterity Therapeutics
Alterity Therapeutics
Episode: Targeting Iron Dysregulation in the Neurodegenerative Condition MSA
Christian Henry
CEO, PacBio
PacBio
Episode: Long Reads, Shorter Journeys
Jen Farmer
CEO of the Friedreich's Ataxia Research Alliance
FA Research Alliance
Episode: The Critical Role of Patient Community-Industry Partnership in Advancing a Gene Therapy
Gabriel Brooks
Chief Medical Officer, Solid Biosciences
Solid Biosciences
Episode: The Critical Role of Patient Community-Industry Partnership in Advancing a Gene Therapy
Kasey Walsh
Founder and CEO of Winsights
Winsights
Episode: Capturing the Lived Experience of Rare Disease
Keith Berelowitz
CEO of PRX Engage / Trialport
PRX Engage, Trialport
Episode: Raising Awareness of Clinical Trials
John Wollman
Head of Revenue Strategy at Komodo Health
Komodo Health
Episode: Using AI and Longitudinal Data to Transform Rare Disease Care

Host

Daniel Levine
Host of RARECast, known for guiding discussions on the intersection of rare disease with business, science, and policy.

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.

Long Reads, Shorter Journeys
Q: How is AI shaping the interpretation of long-read data and the workload for clinicians and genetic counselors?
AI can accelerate interpretation by highlighting missing clues in vast datasets, freeing clinicians and genetic counselors to spend more time with families, while software tools evolve to handle the growing data complexity and improve access to care.
Long Reads, Shorter Journeys
Q: Is there a price point you think you need to be at, and could whole genome sequencing become as affordable as short-read sequencing for broad adoption?
Prices are being driven down through new chemistry and scale, and the expectation is that long-read sequencing will become increasingly affordable, enabling more widespread use and reducing the need for multiple ancillary tests as payers and clinicians recognize the value.
Long Reads, Shorter Journeys
Q: What will that program look like on the ground for patients and clinicians?
The program will operate as a ground-level collaboration that combines sequencing capabilities with financial support to enable underserved patients to access PacBio Hi-Fi sequencing, with an emphasis on building partnerships and capabilities across clinics to deliver timely diagnoses.
Capturing the Lived Experience of Rare Disease
Q: Well, what role do you think patient and caregiver experience should be within drug development?
She describes a significant gap between ideal patient involvement and current practice, emphasizing that patient and caregiver insights can serve as meaningful endpoints and inform both efficacy and safety.
Capturing the Lived Experience of Rare Disease
Q: Kasey Walsh, thanks for joining us.
Acknowledges guest and sets stage for discussing patient experience data, Winsights, and the regulatory implications of capturing lived experience.

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 features conversations at the intersection of rare disease, biotech, and patient advocacy, with a strong emphasis on industry insights, clinical development, and data-driven approaches. Episodes regularly explore gene therapy, diagnostic advances, patient-centric trial design, and strategies for translating research into real-world impact. A notable strength is the mix of patient advocates, researchers, and industry leaders who discuss ethics, regulatory pathways, and the practicalities of bringing therapies to market, often foregrounding patient experiences to illuminate technical discussions. The show is especially useful for listeners who work in biotech, pharma, or advocacy and want a nuanced view of how science, policy, an... more

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Which podcasts are similar to RARECast?

These podcasts share a similar audience with RARECast:

1. Hard Fork
2. Fresh Air
3. The Long Run with Luke Timmerman
4. WSJ What’s News
5. The Daily

How many episodes of RARECast are there?

RARECast launched 12 years ago and published 604 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

How do I contact RARECast?

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What guests have appeared on RARECast?

Recent guests on RARECast include:

1. Craig Leppert
2. Miquel Vila-Perello
3. David Stamler
4. Christian Henry
5. Jen Farmer
6. Gabriel Brooks
7. Kasey Walsh
8. Keith Berelowitz

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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