Orphan Drugs: A Global Crusade

by Abbey S. Meyers

This book of Ms. Meyers’ memoirs is her effort to document the issues that led to enactment of the “Orphan Drug Act of 1983” in the United States. The struggle of patient organizations, medical researchers and the American public stood as a model for the rest of the rare disease world. Eventually many industrialized countries enacted their own orphan drug laws which spurred extraordinary scientific and industrial progress that resulted in new treatments and cures for millions of rare disease patients throughout the world. Ms. Meyers stated that, “One day, I wish everyone dealing with the pain and misery of the 7,000 rare disorders will have access to a treatment that will alleviate their symptoms. The reason I wrote this book was to show that individuals did not have the political power to solve this problem, but working together rare disease patients represent millions of people who can be a formidable political force. And the accomplishments of patient led charities in the USA served as a model for the rest of the industrialized world. Together we became the “Global Crusade” for people with rare disorders.”

312 pages, Paperback

Published January 1, 2016