[turtleyacht]

How do people needing (and willing to risk) treatment hear about repurposing studies?

[giuliomagnifico]

I think in the same way they participate in other clinical trials.

[astura]

Big medical systems will post their clinical trails quarterly or so. If you have a big medical system near you you can sign up for emails. I imagine universities would have a mailing list too, if they regularly did clinical trials.

You can also search here: https://clinicaltrials.gov/

I was a clinical trial participant once and it was a positive experience for me.

[bell-cot]

Communities (on-line or off-line) of people who share your disorder, and maybe health care professionals who see many patients with your disorder.