NORD Issues Statement on the FDA’s Orphan Drug Modernization Plan

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Washington, D.C., June 29, 2017 — The following statement was issued today by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), following the FDA’s announcement of its Orphan Drug Modernization Plan:

“NORD is grateful to FDA and its recently-appointed Commissioner, Dr. Scott Gottlieb, for its commitment, announced June 29, to eliminating the orphan designation backlog.

Expediting the orphan drug designation process sends an important message to the entire rare disease stakeholder community that FDA and its new leadership are committed to the availability of more orphan drugs.  Patients with rare diseases need more and better drugs, and we who represent the patient community recognize the central role that FDA plays in that process. We look forward to continuing to work with the agency as it moves ahead to implement its Orphan Drug Modernization Plan.”