  This is a paper written by a high school student with PV and
was mentioned in the Spring 2009 Quarterly.  A rare disease is
defined by the federal government as one that affects less than
200,000 people in the United States (NORD 1). The National
Institutes of Health (NIH) recognizes about 6,000 distinct
conditions as rare diseases (Murphy 12). These disorders affect
more than 25 million people in the United States. In other
words, approximately one in every ten people suffers from a rare
disorder (NORD 1). Historically, the small numbers of patients
suffering from individual rare diseases received limited medical
support. For the past quarter century, however, the medical
community and the federal government have worked together to
provide these individuals with diagnostic care, medications and
treatment, and financial support comparable to those with more
common illnesses. In addition to serving the rare disease
community, this public-private cooperation is even more
significant because of the nature of r