Washington, DC, January 17, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced two additions to its management team, effective immediately.
Rachel Sher joins NORD as Vice President of Regulatory and Government Affairs, based in the Washington, D.C. office. Rachel brings nearly 20 years of experience in health policy and regulatory affairs, most recently serving as Deputy General Counsel at the Association for Accessible Medicines (AAM). Prior to joining AAM, Rachel served as Senior Policy Analyst in the Commissioner’s Office of Policy at the Food and Drug Administration (FDA) where she acted as the FDA lead in the 21st Century Cures Act legislative process. For ten years before joining FDA, Rachel served as Senior FDA Counsel for Ranking Member (Formerly Chairman) Henry A. Waxman, both on the Democratic Committee Staff for the Energy and Commerce Committee and in Representative Waxman’s personal office. She holds degrees from the University of Florida Levin College of Law (J.D.), The George Washington University School of Public Health (M.P.H.) and Duke University (B.A.). Rachel brings this breadth of expertise to leading NORD’s strategy for engaging with federal and state regulatory agencies and key policymakers and effecting change for the rare disease community.
Lesli Nordstrom joins NORD as Director of Marketing and Communications, based in the Danbury, CT office. Most recently, Lesli was responsible for developing communication campaigns and marketing strategies for various public and private clients at Arch Street Communications. Prior to her career in marketing, Lesli developed and managed programs for the Chicago Council on Global Affairs. Lesli earned her Master of International Affairs in Management and Institutional Analysis from Columbia University’s School of International and Public Affairs and her B.A. in History from the University of Kentucky, and was a Fulbright Scholar in the field of International Relations in Stockholm, Sweden.
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 more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect 25-30 million Americans. More than half of those affected are children.
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 35 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 280 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.