Ectodermal Dysplasias - otherwise called - Vampire teeth

I just had a grandson born a year & 1/2 ago. I took them till now to figure out that he has ectodermal dysplasia. Other than info@nfed.org,
there are no active Medical facilities doing research, much less treatment (trials) for this condition. There are a few prenatal studies of where they were able to correct the genetic disorder so the child is born normal. (study: added something while prenatal. 10 babies over the last few years) The thing is, both parents were screened for prenatal conditions.
It has been 4 months since his first mouth swab dna test was done. Today they just did a blood draw. It seems they are going awful SLOW (Children's Hospital, Mpls) This disease has been around for a long time. I would think a treatment, hormones, and/or what he is missing genetically could be added to his system so he will develop sweat glands, fingers, toenails, etc. (despite his genetics.) He is going to be "educationally handicapped". There is a NFED association but they seem to deal more with teeth costs grants than research.
Does anybody know of trials going on? Do experts from Mayo read these posts?