My name is Abbey Meyers. I am President of the National Organization for Rare Disorders.
Most rare diseases are genetic conditions, many are life-threatening, and nearly all are disabling.
Throughout the United States, patients with rare disorders, their families and advocacy groups work very hard to fund biomedical research on each of these devastating illnesses. And sadly, treatments would never become available to patients. This is because the cost of research and development of new drugs outweighs the potential for profit when the market for each rare disease is so small. To solve this dilemma, NORD members advocated for passage of the Orphan Drug Act . For the first time, financial incentives were created to entice pharmaceutical companies into developing new treatments and cures for rare diseases.