Peter Saltonstall, President and Chief Executive Officer of the National Organization for Rare Disorders (NORD) discusses some of the challenges facing the rare disease community, including the perception that drug pricing for orphan drugs is a driving force behind rising drug prices.

According to Mr. Saltonstall, orphan drugs account for about $9.2 Billion of the overall $452 Billion drug cost in the United Stares. In order to tackle rising drug prices, legislators are best served focusing on the larger segment that make up the problem. NORD is currently working to identify the costs and benefits of the Orphan Drug Act, as well as taking on the perception that rare diseases and orphan drugs are main reason for rising drug prices.