Feb. 15, 2022
Posted by Rohan Narayanan
Rare disease community eager to continue important partnership with FDA
February 15, Washington, DC – Today, the National Organization for Rare Disorders (NORD) President and CEO Peter Saltonstall issued the following statement following the confirmation of Robert Califf as Commissioner of the Food and Drug Administration (FDA):
“NORD and the rare disease community commend the Senate for the confirmation of Robert Califf as Commissioner of the FDA. Commissioner Califf’s previous experience at FDA gives him critical first-hand knowledge of the unique challenges associated with developing safe and effective treatments for rare diseases, as well as the importance of meaningful partnerships between the FDA and rare disease patient organizations such as NORD.
“NORD is excited to continuing to drive rare disease innovation alongside FDA and ensuring the patient voice is incorporated into regulatory decision making. More than 90% of rare diseases lack an FDA-approved treatment, and NORD is looking forward to working alongside Commissioner Califf and the FDA to further the identification, treatment, and cure of rare disorders.”
Since its establishment in 1983, NORD has advocated for policy changes to improve the lives of Americans impacted by rare diseases at the federal and state levels. To learn more about NORD’s advocacy and policy positions, visit the NORD website.
About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.