The Launch of NORD Founder, Abbey Meyers’ memoir “Orphan Drugs: A Global Crusade”
Mark speaks with Abbey Meyers, founder and past President of the National Organization for Rare Disorders (NORD), about the launch of her new book Orphan Drugs: A Global Crusade.
Ms. Meyers opens up about the struggles she had in getting a proper diagnosis for her son, who was eventually diagnosed with Tourette’s syndrome, followed by additional struggles to get treatment option that was safe and effective. The talks about her unwavering efforts that ultimately supported the enactment of the groundbreaking “Orphan Drug Act of 1983”
Among her many accomplishments, Ms. Meyers served as the consumer representative on the National Commission on Orphan Diseases (1986-89), the NIH Human Gene Therapy Subcommittee, the NIH Recombinant DNA Advisory Committee (RAC), the FDA Biological Response Modifiers Committee, and the HHS National Human Research Protections Advisory Committee. She was also an Honorary President of the European Organization for Rare Disorders (EURORDIS) and currently hold the honorary title of President Emeritus of NORD.
Ms. Meyers asserts to Mark, “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.”
For more information on Orphan Drugs: A Global Crusade, Abbey Meyers and to download the book in its entirety please visit: www.AbbeySMeyers.com.
air date: 2/16/16