Rare Disease SIG

Established April 2017

Mission Statement

To provide an interactive and collaborative forum to discuss, develop and improve the use of epidemiological approaches for rare disease research.


  • To create a central data repository for definitions and regulatory environments for rare disease therapeutic products
  • To identify epidemiological approaches for natural history of rare diseases and safety and long-term outcomes of therapeutic products that treat rare diseases
  • To identify existing data sources and professional and research networks that may be considered for rare disease research
  • To identify issues unique to rare disease pharmacoepidemiology, and to explore methodological approaches to address these issues
  • To serve as a resource to the ISPE membership by providing expertise in rare disease pharmacoepidemiology and educational content in the area

Meeting Schedule

Monthly teleconferences and face-to-face meetings during ISPE mid-year and annual meetings

Please visit our ISPE Community for the latest SIG news, upcoming meetings, membership, documents library, connecting with SIG members and leaders, and more. An account is needed to access the community and join it.

SIG leader(s)

Chair Daniel Rosenberg
Vice Chair TBD