Feb 15 - Abbey Myers
🌟 Abbey Meyers: A Trailblazer in Rare Disease Advocacy 🌟
Abbey Meyers became a pioneering force in rare disease advocacy during the 1970s when her son was diagnosed with Tourette syndrome. Motivated by a mother's determination, she dedicated herself to seeking solutions and support.
In 1983, Meyers achieved a significant milestone with the passage of the Orphan Drug Act, a groundbreaking law incentivizing drug development for rare diseases. This accomplishment marked the foundation of the National Organization for Rare Disorders (NORD), which Meyers established as a pivotal force in the rare disease advocacy movement.
Facing various challenges, including financial hurdles and discrimination, Meyers persisted in her efforts. She initiated funding for rare diseases, facilitated the inclusion of provisions for generic biotechnology drugs in healthcare laws, and spearheaded the creation of a rare disease database.
Meyers served as NORD's President until 2008 and held influential roles globally, including as Honorary President of the European Rare Diseases Organisation (EURORDIS) and as a consumer representative on esteemed committees such as the FDA Biological Modifiers Committee.
Her remarkable contributions were recognized with prestigious awards, including the FDA Commissioner’s Special Citation and the Department of Health and Human Services’ Public Health Service Award. Additionally, she received an Honorary Doctorate from Alfred University in New York.
In her memoir "Orphan Drugs: A Global Crusade," published in 2016, Meyers documented her extraordinary journey. Her legacy stands as a testament to the transformative impact of advocacy in advancing rare disease research and treatment. 🌐💙
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