This statement was released by the National Organization for Rare Diseases (NORD), on Dec. 2, 2017, in response to the passing of a tax bill that has serious implications for drug development for rare diseases.
Washington, D.C., December 2, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the Senate passage of its Tax Cuts and Jobs Act:
“Today, the Senate voted to substantially diminish the Orphan Drug Tax Credit as part of its Tax Cuts and Jobs Act.
It is difficult to put into words how gravely disappointed we are that the Senate has chosen to cut, nearly in half, a crucial incentive for rare disease drug development when 95 percent of rare diseases remain without one single treatment.
The Senate version of the Tax Cuts and Jobs Act will now head into conference with the House of Representatives’ version, wherein the Orphan Drug Tax Credit is repealed entirely. While we are dismayed at the possibility that the Orphan Drug Tax Credit could be weakened, to have it repealed entirely would be absolutely devastating.
Consequently, we will continue to make our voices heard on the importance of this life-saving credit.
With over 200 patient organizations and the millions of Americans that comprise the rare disease community, we will continue to implore that Congress uphold the Senate’s version as it relates to this crucial incentive.”