How to Generate Research on "Orphan" Diseases?

The Terrys began to suspect that PXE had remained mysterious not simply because its genetic causes were complicated, but also because neither universities nor pharmaceutical companies were set up to deal with relatively rare diseases such as PXE.

Careers in university research centers depend upon winning grants and publishing articles in prestigious journals, and this was far easier if one was working on well-known diseases, rather than an "orphan" disease such as PXE — or, if one was working on PXE, hoarding one's own samples so others could not make a discovery first. Pharmaceutical companies, for their part, were not interested in developing therapies or cures for a disease that afflicted such a small market segment (about 10,000 to 15,000 people in the U.S.).