Episode
Unlocking Trust and Rare Diseases with Wes Michael
- Podcast
- Unlocked with Skot Waldron
- Published
- Feb 24, 2026
- Duration seconds
- 2142
- Processing state
not_requested
Actions
POST https://stenobird.com/v1/public/podcasts/unlocked-with-skot-waldron-6291578/episodes/unlocking-trust-and-rare-diseases-with-wes-michael/transcription-requests
Idempotently request low-priority transcript generation for this episode.GET https://stenobird.com/podcast/unlocked-with-skot-waldron-6291578/unlocking-trust-and-rare-diseases-with-wes-michael.md
Read the agent-friendly Markdown representation of this episode resource.
Summary
If you've ever felt like healthcare "listens" to patients the way a cat listens to a vacuum… this episode is for you. Wes Michael (Rare Patient Voice) breaks down what it really takes to build a community where patients feel safe, respected, and actually heard and how that trust turns into better research, better decisions, and better outcomes in rare disease. Skot and Wes talk about the company's evolution, why patient time should be compensated, how surveys and interviews turn lived experience into usable insight, and the difference between "collecting data" and "earning truth." You'll also hear why caregivers matter, what advocacy looks like in practice, and how meaningful work scales when you protect the human part of the process. Timestamps: 00:00:00 – Intro & Highlights 00:04:34 – Rare Disease Day and Why This Conversation Matters 00:05:04 – The 12-Year Cycle: Why Wes Chose to Make a Big Change 00:07:41 – Working with Pharma: Where Patient Insight Fits 00:08:19 – Paying Patients for Their Time (and Why That's Respect) 00:09:35 – Surveys, Interviews, and Capturing the Real Story 00:13:26 – Turning Lived Experience into Useful Data and Decisions 00:17:22 – Caregivers: The Missing Piece Most People Overlook 00:23:59 – Lightning Round: Trust Killers, Hiring Lessons, Keeping Promises 00:32:20 – Advocacy, What's Next, and Wrap-Up Website: rarepatientvoice.com LinkedIn: www.linkedin.com/in/wesmichael Instagram: www.instagram.com/rarepatientvoice Facebook: www.facebook.com/rarepatientvoice