NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
This place is the largest research facility of it's kind in the world for dealing with rare diseases. It is funded by the US government so they don't charge anything. The doctors and labs there work with cutting edge technology and it does not cost the public nothing. All we have to do is write them about our problem, it goes thru a review board made up of lawyers, doctors, scientists, and biologists.
They work with the cutting edge technology like immunotherapy. Yes this is still in its infancy stage but they have made much head way.
On their web site, they mention that they will work with rare diseases that doctors and specialists give up on or have never heard of. I'm going to write them about our problem and see where it goes from there.