NORD recently joined 140 other patient advocacy organizations in sending a letter to Congress urging that the Orphan Drug Tax Credit remain in place. The Orphan Drug Tax Credit is one of the incentives in the Orphan Drug Act that have promoted R & D on diagnostics and treatments for people with rare diseases since 1983.
As Congress discusses possible approaches to tax reform, some options would include doing away with the ODTC. However, NORD and its policy partners believe patients with rare diseases would suffer if that were to happen. A 2015 study showed that one-third fewer orphan drugs would be developed if the ODTC did not exist.