Very sorry to hear this.

Have you checked out any international Clinical Trials? You can search a lot of these here: https://clinicaltrials.gov/ getting the filters right can be tricky though. I’d ask AI for some help looking for the right permutations of names for things.

I’d book a call with FCCT as well. They have a list of private vendors that can potentially help with genetic sequencing and a few other things. They also mentioned a service to me that helps you search for potential clinical trials.