Patient Empowerment Program: A Rare Disease Podcast

n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)

N-Lorem Foundation

N-Lorem

Nano-Rare Diseases

Antisense Technology

Antisense Oligonucleotides

Rare Diseases

HNRNPH2

RNA World

Rare Genetic Diseases

Antisense Oligonucleotide (ASO) Technology

Clinical Trials

Caregiving

NANORARE Mutations

Health

TUBB4A

KIF1A

Patient Empowerment

Ion Channels

Gene Therapy

Patient Advocacy

Join the nano-rare disease community! Interviews features leading physicians, scientists, biotech experts, and patient advocates. Lessons teach core concepts about drugs. Our host Dr. Crooke has led the creation of antisense technology and his foundation, n-Lorem, is using this powerful technology to discover, develop, and provide personalized experimental antisense oligonucleotide medicines to na... more

51 ratings

Publishes	Twice monthly	Episodes	99	Founded	4 years ago
Number of Listeners		Categories	EducationLife SciencesScience

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Guests Host Reviews Charts Talking Points

Latest Episodes

Patient Story: Understanding ALS with Bill O'Sullivan and Neil Shneider, M.D., Ph.D.

In this episode of the n-Lorem Patient Empowerment Program Podcast, Dr. Stan Crooke is joined by n-Lorem patient Bill O’Sullivan and Dr. Neil Shneider to discuss Bill’s experience living with a rare inherited form of ALS caused by a CHCHD10 mutation.... more

17 Jun 2026 • 52 min

YouTube

Miracles of Science #3: RNA World Part 3

In this episode of the n-Lorem Patient Empowerment Program Podcast, host Stan Crooke explores the fascinating world of RNA biology and explains how different types of RNA work together inside cells. He breaks down the roles of ribosomal RNA, messenge... more

3 Jun 2026 • 36 min • Most popular

YouTube

Miracles of Science #3: RNA World Part 2

In Part 2 of the n-Lorem Patient Empowerment Program podcast Miracles of Science series on RNA, Dr. Stan Crooke further explores the fascinating “RNA world,” explaining how RNA molecules are processed, protected, modified, and used to manage cellular... more

27 May 2026 • 27 min

YouTube

Miracles of Science #3: RNA World Part 1

In this episode of the n-Lorem Patient Empowerment Podcast, Stan Crooke explores the “RNA World” — the groundbreaking field of RNA biology that helped make modern genetic medicine possible. Drawing from personal experience, he shares the scientific b... more

20 May 2026 • 33 min • Popular

YouTube

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Number of Listeners

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Recent Guests

Callan Pleasant

Parent of Layken; advocate and storyteller

Pleasant family; Nano-rare patient advocate

Episode: Realizing Hope for Layken

Oliver Glass

Parent of a nano-rare patient, clinician by training? (as introduced in dialogue)

Household member of Ethan; Chief Scientific Officer of the Dirk 1A Foundation

Episode: Realities of the Nano-rare: Episode 2 Oliver Glass

Sarah Glass

COO of n-Lorem; wife and mother of a nano-rare patient

n-Lorem Foundation

Episode: Realities of the Nano-rare: Episode 1 with Sarah Glass

Andrew Lo

Professor of Finance, MIT Sloan School of Management; Director, MIT Laboratory for Financial Engineering; PI, CSAIL

Massachusetts Institute of Technology

Episode: Where Emerging FDA Draft Guidance may Lead for Nano-rare Patients

Natacha Gassenbach

Senior Vice President of Corporate Affairs and Chief Communication Officer at Biogen

Biogen

Episode: Natacha Gassenbach of Biogen: 2025 Hero of n-Lorem

Susan Hoyt

Director of Publications at Institute for Trial Advocacy

Episode: Seeing with Grace: A Teen’s Journey with a Rare Vision-Affecting Disease

Grace Hoyt

High school sophomore with a rare vision-affecting disease

Episode: Seeing with Grace: A Teen’s Journey with a Rare Vision-Affecting Disease

Brady Huggett

Features editor at The Transmitter, focused on neurosciences and neurodegenerative diseases

Episode: Sneak Peak of the 2025 Nano-rare Patient Colloquium

Luke Rosen

Father of Susanna, a patient with nanorare mutations

Episode: Meet Rescue 7: Firefighters Serving Patients

Host

Stanley T. Crooke

Founder, CEO and Chairman of n-Lorem Foundation; host of related series emphasizing nano-rare disease research and antisense therapy.

Reviews

5.0 out of 5 stars from 51 ratings

So informative and important!
What the n-Lorem foundation is doing for rare disease is a game changer. Hearing from Stan Crooke and the experts and families he interviews is so informative.
Apple Podcasts
5
Flygirl3663
United States4 years ago
Nano what?
Prior to n-Lorem, patients who didn’t fit into the current healthcare model, were isolated and alone. With this podcast, these patient are front and center. A podcast for and about them! And a master class in basic drug chemistry that anyone would benefit from.
Apple Podcasts
5
Friendly?
United States4 years ago
Excellent resource for patients. Very clear!
Thanks to Dr. Stanley Crooke and nLorem Foundation for an excellence resource for people living with diseases, their families and for all who want to learn more about BioPharma.
Best wishes!
Apple Podcasts
5
lalitafer
United States4 years ago
Fantastic
Very exciting news
Apple Podcasts
5
papanormie
United States4 years ago
Outstanding
Liked learning more about the rare diseases.
Apple Podcasts
5
ealinek
United States4 years ago

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Listeners Say

Key themes from listener reviews, highlighting what works and what could be improved about the show.

Strong emphasis on patient advocacy and community support for rare diseases.

Insightful and inspiring for families dealing with nano-rare diseases.

Educational and accessible explanations of complex science.

High-quality guest mix and meaningful stories about treatment futures.

Shows impact of early-stage biotech efforts on real patients.

Chart Rankings

How this podcast ranks in the Apple Podcasts, Spotify and YouTube charts.

Apple Podcasts	#220	United States/Science/Life Sciences
Apple Podcasts	#189	United Kingdom/Science/Life Sciences
Apple Podcasts	#64	Hong Kong/Science/Life Sciences
Apple Podcasts	#178	Japan/Science/Life Sciences
Apple Podcasts	#237	Taiwan/Science/Life Sciences

Talking Points

Recent interactions between the hosts and their guests.

Realities of the Nano-rare: Episode 1 with Sarah Glass

Q: As you look forward to a long life for Ethan, how are you thinking about that? How are you planning it? What terrifies you?

The biggest fear is something happening to Stan or me before we have plans in place to protect Anela and Ethan. So we're focusing on estate planning, special needs planning, life insurance, and creating a future where Ethan can be as independent as possible, potentially involving care arrangements that balance safety with autonomy.

Realities of the Nano-rare: Episode 1 with Sarah Glass

Q: So, maybe as a first step, why don't you just tell us a little bit about yourself and your family, so that we can begin to put some context.

I'm a geneticist by training with two decades in rare disease work, married with two kids, and we live in Durham, North Carolina. Our son Ethan has a nano-rare condition, which shaped our family's daily life, the care we seek, and the way we think about the future. This background helps us understand how families navigate uncertainty, diagnoses, and ongoing care.

Realities of the Nano-rare: Episode 2 Oliver Glass

Q: So Oliver, just to get underway.

Oliver describes his background, the early signs that led to suspicion something was wrong with Ethan, and how his scientific training intersected with the family's search for answers, including how the Dirk 1A mutation influenced their path.

Connor Gooley's Story: A First for TUBB4A Treatment

Q: What kind of progress have you seen since starting treatment?

After four doses, they are noticing improvements in Connor's movements, like stability in his head and some increase in control, making them cautiously optimistic.

Connor Gooley's Story: A First for TUBB4A Treatment

Q: How has Connor's condition affected your life?

Initially, it was tough, especially during COVID. The uncertainty fluctuated between hope and despair, but eventually, they found a community and support that made things manageable.

Audience Metrics

Listeners, social reach, demographics and more for this podcast.

Listeners per Episode
Gender Skew
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Professions
Age Range
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Frequently Asked Questions About This Podcast

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

Listeners are likely engaged in science, biotech, and patient advocacy, drawn to deep dives on nano-rare diseases, antisense technology, and personalized medicine. Episodes typically feature researchers, clinicians, patient families, and industry advocates, often discussing funding, safety, and the practicalities of delivering experimental therapies for ultra-rare conditions. A notable strength is the emphasis on real patient stories and the practicalities of navigating trials and access to treatments, which can help potential guests and sponsors understand the impact and audience interests. The format appears to prioritize accessible explanations of complex science, practical ethics, and community-focused support for nano-rare patients, ma... more

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1. The Readout Loud
2. The Daily
3. Heavyweight
4. The 7

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this podcast launched 4 years ago and published 99 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 this podcast?

Recent guests on this podcast include:

1. Callan Pleasant
2. Oliver Glass
3. Sarah Glass
4. Andrew Lo
5. Natacha Gassenbach
6. Susan Hoyt
7. Grace Hoyt
8. Brady Huggett

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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