Washington, DC, September 23, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced the appointment of Aliza Fink, D.Sc. as the new Director of Research Programs. Fink, an epidemiologist by trade, brings decades of expertise and proficiency to NORD’s ongoing efforts to identify real-world research, enhance registry data, and collaborate with a broad network of institutions to support rare disease breakthroughs.
“Research gives hope to rare disease patients and their families across the globe, and NORD is thrilled to have such a capable director to lead our research efforts,” said Peter L. Saltonstall, President and CEO of NORD. “This is an exciting time for rare disease research, and Aliza will be an important driver of NORD’s initiatives to grow natural history studies to fuel innovations that bring more treatments to those that need them most. More than 90% of rare diseases lack an FDA-approved treatment – together, we can employ research and data to continue to push for advancements, treatments, and cures.”
In her role, Fink will lead the strategic development, growth, and implementation of NORD’s research and scientific activities, ensuring that NORD drives innovation and advancement while supporting the rare community with evidence-informed programs. NORD’s IAMRARE(R) Registry program, created six years ago, houses data across more than 40 rare conditions. Since its inception the program has received over 125,000 survey submissions by more than 13,000 enrolled participants. In addition to registries, NORD administers a research grant program that has awarded more than 200 grants, representing over $9 million in approved funding since the program’s launch in 1989.
Prior to joining NORD, Fink was most recently Senior Director of Real-World Research at Cystic Fibrosis Foundation and brings over 20 years of experience in research and epidemiology to leading NORD’s research portfolio. She has also served as an Epidemiologist at ICF International Inc, working as a contractor to the Centers for Disease Prevention and Control and state departments of health. Fink has a D.Sc. in Epidemiology from Boston University School of Public Health and an M.Sc. in Epidemiology and B.Sc. in Toxicology from the University of Toronto.
About 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 330 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.
