Abbey S. Meyers, Ph.D.

Abbey S. Meyers is the founder and past President of the National Organization for Rare Disorders (NORD), a coalition of national voluntary health agencies and a clearinghouse for information about little known illnesses. Abbey currently holds the honorary title of President Emeritus of NORD, and in the past she also served as Honorary President of the European Organization for Rare Disorders (EURORDIS) before she retired from her busy life as a leader of the rare disease consumer movement in 2009.

During her professional career in the United States Ms. Meyers served as the consumer representative on the National Commission on Orphan Diseases (1986-89), the NIH Human Gene Therapy Subcommittee (1989-92), the NIH Recombinant DNA Advisory Committee (RAC) (1993-96), the FDA Biological Response Modifiers Committee (1995-99), and the HHS National Human Research Protections Advisory Committee (2000-2002).

Mrs. Meyers is the recipient of the FDA Commissioner's Special Citation for Exceptional Dedication and Achievements on Behalf of All People Afflicted with Rare Disorders (1988), and the Department of Health and Human Services Public Health Service Award for Exceptional Achievements in Orphan Drug Development (1985). Mrs. Meyers holds an Honorary Doctorate from Alfred University in New York. She is considered the primary American consumer advocate responsible for passage of the Orphan Drug Act of 1983.

Throughout her career, Ms. Meyers has been sitting on many committees, boards and commissions dealing with orphan diseases at the national and international levels.

She is also the author of many articles and papers related to this topic and has been a frequent speaker at numerous conferences in North America, Europe and Asia. Abbey Meyers is also a member of the Advisory Board of Medunik Canada, a company dedicated to making orphan drugs available to Canadian patients even though Canada does not have an orphan drug law.