Washington, D.C., May 10, 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 on the confirmation by the U.S. Senate of Scott Gottlieb, M.D., as Commissioner of the Food and Drug Administration (FDA):
“We at the National Organization for Rare Disorders look forward to working with Dr. Scott Gottlieb, the new Commissioner of the FDA. Dr. Gottlieb is well aware of the importance of early diagnosis of rare diseases and of the need for new treatments for the 30 million American patients with a rare disease. His insights into the issues and challenges facing the FDA and his previous service at the agency will serve him well as he assumes this important leadership position.”
There are 7,000 rare diseases that affect 200,000 or fewer Americans. The majority still have no treatment.
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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. NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. 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. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most. NORD represents more than 260 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community. www.rarediseases.org.
Media Contact:
Lisa Phelps
(203) 702-2872
lphelps@rarediseases.org