292 - The Hidden System Behind Rare Disease Treatments

What starts with airport chaos and accessibility frustrations turns into a meaningful conversation about what it really takes to move rare disease research forward.

Sean and Kyle kick things off with travel stories from their trip to Rare At Sea, including misplaced mobility equipment, inaccessible hotel setups, and the all-too-common surprises that come with traveling disabled. Then they’re joined by Derek Ansel, who pulls back the curtain on the world of clinical research—breaking down what CROs do, why diagnosis matters so much, and how patients, providers, and industry all play a role in bringing treatments closer to reality.

It’s equal parts relatable, informative, and encouraging—mixing everyday disability experiences with a behind-the-scenes look at the systems, strategy, and people helping drive progress in rare disease.