I am a missouri Girl. Mayo clinic sent me to Columbia University medical center... ( One Hospital drive) in Columbia. They have alot of doctors there that specialize in rare or orphan diseases. I would at least call and see if there is this kind of help there. The hospital is fantastic. It would be worth the phone call. The patient advocasy person, maybe able to direct you. I hope help can be found. This is a teaching hosptial that does research. ginnie