Silver Spring, Maryland

Director of Research Programs, National Organization for Rare Disorders

Representing: Patients, Caregivers, and Patient Advocates
Term Ends July 2025

Aliza Fink, DSc, MS is currently the Director of Research Programs at the National Organization for Rare Disorders (NORD®). Aliza joined NORD in 2021 and prior to that was the Senior Director for Real World Research at the Cystic Fibrosis Foundation. Engagement of individuals with rare diseases has been fundamental to her work, including the development of a Patient and Family Research Advisory Committee, soliciting community feedback regarding important research questions, co-designing research studies with individuals with rare diseases, and supporting dissemination of research to individuals with rare diseases.

In her current role, she provides support and infrastructure for rare disease patient advocacy groups to engage in research through the development of natural history studies, grant management support, engaging in the development of clinical outcome assessments and data standards, and supporting a culture of data sharing.

Dr. Fink has a DSc in epidemiology from the Boston University School of Public Health.

    Conflicts of Interest

    As of March 29, 2022:

    • National Organization for Rare Disorders, Employer
    • Cystic Fibrosis Foundation, Investments


    Person Type
    Panel / Committee