I was looking at trigeminal neuralgia on the NORD(Rare diseases) site and they have a couple places that they try and get researchers and patients together.
The one that interested me the most was this one
The NIH Clinical Center has joined with ResearchMatch, a national online clinical research recruitment registry that “matches” people who want to take part in clinical studies with researchers who seek volunteers for those studies. These researchers are approved to recruit potential research volunteers through ResearchMatch. Learn more by visiting https://www.researchmatch.org/?rm=volunteer5.
It is only available to people living in the States or Puerto Rico.I am in Canada
There were a couple of other places they suggested I try.If anyone is interested then contact me and I will give the whole letter.