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Member Snapshot

NORD’s membership is comprised of a diverse array of patient organizations. Currently, we have 330 members who together represent hundreds of diseases. Here are some facts about the rare disease organizations that make up NORD.

Small but mighty

  • About 81% of our members have less than 5 full-time employees; the majority are run with no full-time employees (source: 2017 member survey)
  • 21% operate with a budget of less than $25,000 and 46% less than $200,000 (source: 2017 member survey)


  • 71% still have their original founders involved in the governance (source: 2017 member survey)
  • Nearly 6% of our organizations have over 40 years of experience (source: 2017 member survey)

Connected to patients

  • 95% of organizations said they are largely funded by individual donors (source: 2017 member survey)
  • Together, our members are in touch with more than half a million rare disease patients!