The Consumer's View of Orphan Drugs
Abstract
CLIN. RES. PRACTICES & DRUG REG. AFFAIRS, 2 ( 2 ) , 161-164 (1984) THE CONSUMER'S V I E W OF ORPHAN DRUGS Abbey S. Meyers Director, Government and Industry Liaison Committee National Organization for Rare Disorc-rs I am here to represent the National Organization for Rare Disorders, which is an organization that has combined, due to the orphan drug issue, many voluntary agencies who were fighting for one drug at a time for their specific illness. It became apparent a number of years ago that i f we all got together and started working to solve the problem permanently, we would not be wasting resources and duplicating each other's efforts. so the organization was incorporated and formalized, and we have been inundated with work because i t seems that everyone has a rare disease or knows someone with a rare disease, and hardly anyone can obtain information about these diseases. It is a great deal of work to learn about all of these illnesses and find out where research is being conducted. In many cases, there is no ongoing research and there is little information about these illnesses. 161 Copyright 0 1984 by Marcel Dekker, Inc. 0735-7915/84/0202-0161$3.S0/0