68. the NIH has my colon! the research episode

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hi hello hey, have you ever been a test subject?

We have! Having a rare disease like Hermansky-Pudlak Syndrome, we often get recruited to participate in a variety of medical research. The goals of each study vary, but the goal is to identify potential treatments to help improve various aspects of our disease. We’ve given so many samples to the National Institutes of Health, universities, and even private companies.

Although being part of medical research can be difficult to process, the value to our community is tremendous. We’re happy to laugh about the quirks of these experiences, and we hope you enjoy this episode!