Never met a high school student that knew a condition I was unfamiliar with, well done.
It can be pretty tough to get into specific research like that as a high school student. Typically, physicians and major labs will look for people with prior research experience med students, Phds, undergrads from their own/nearby institutions for positions like that. I would try looking up local physicians and institutions doing research on the subject and contacting them about helping out. If you can't find anyone/no one will take you, contact places near you and ask what kind of research they do and if there is any way you can get involved.
As a high school student, no one expects you to be proposing your own ideas. This is the time for you to find a lab where someone will teach you the basics and just build up some experience. If you have any research experience in a lab when you're applying to colleges you will be way ahead of most of your peers. So at this point, I would just try and get into any lab, get some experience under your belt, and learn the everything involved in doing research (writing grants, running basic tests, writing up reports, etc.). There is much more to creating and running your own research than you would expect, the best thing you can do right now is just to get your foot in the door and learn about the process.