On this Mother’s Day, NORD would like to recognize the rare disease “Mom” who 40 years ago, brought us all together to where we are today.
Abbey Meyers is the “mother” of a movement – the rare disease advocacy movement. In 1983 this movement became the National Organization for Rare Disorders (NORD), the first national nonprofit to advocate and represent the voices and needs of all individuals and families affected by rare diseases.
Like so many of us in the rare disease community, Abbey’s crusade started as a determined parent for whom “no” has never been an acceptable answer, especially when searching for treatment for her son’s Tourette’s syndrome in the 1970’s. She assumed she wasn’t the only parent waging such a battle for their child.
Stronger together, Abbey built a coalition of caregivers and support groups. Their cause became the Orphan Drug Act, the world’s first law incentivizing drug development for rare diseases. Their coalition became NORD. These two milestones, forever intertwined, marked a turning point for rare diseases.
Abbey became NORD’s first president, and so began NORD’s 40-year history of patient-centered stewardship and innovation to advance rare disease care, treatment and research. She served as NORD’s president until 2008. Abbey also served as Honorary President of Rare Diseases Europe (EURORDIS), formerly known as the European Organisation for Rare Diseases.
Throughout her career, Abbey has held numerous roles focused on rare diseases. She served as the consumer representative on the National Commission on Orphan Diseases, the NIH Human Gene Therapy Subcommittee, the NIH Recombinant DNA Advisory Committee, the FDA Biological Modifiers Committee and the HHS National Human Research Protections Advisory Committee.
Her tireless advocacy has been deservingly recognized with the FDA Commissioner’s Special Citation for Exceptional Dedication and Advancements on Behalf of All People Afflicted with Rare Disorders and the Department of Health and Human Services’ Public Health Service Award for Exceptional Achievement in Orphan Drug Development. She also holds an Honorary Doctorate from Alfred University in New York.
Abbey has authored numerous articles and papers on rare diseases and has been a frequent speaker. She published her memoir, Orphan Drugs: A Global Crusade, in 2016.
Our community is forever grateful for Abbey’s years of dedication to leading and serving the rare disease patient community. Last week on NORD’s 40th Anniversary, NORD proudly presented Abbey with a Lifetime Achievement Award.
Abbey is now a grandmother to eight grandchildren – all of whom are girls. She reminds her granddaughters, “It is possible for them to accomplish anything in the world, because after all, their grandmother (a housewife from Connecticut), passed a federal law for orphan drugs.”
Happy Mother’s Day to Abbey and all the other fierce and resilient rare “Moms” and advocates in our community. Thank you for all you’ve done and continue to do.