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Member Snapshot

NORD’s membership is comprised of a diverse array of patient organizations. Currently we have over 260 members who together represent hundreds of diseases. Here are some facts about the rare disease organizations that make up NORD.

Small but mighty

  • About 70% of our members have less than 5 full-time employees, majority are run by 1-2 volunteers
  • 20% operate with a budget of less than $50,000

Experienced

  • 71% still have their original founders involved in the governance
  • Over 10% of our organizations have over 40 years of experience
  • Approximately 50% of our organizations were founded in the 1980s-1990s, like NORD!

Connected to patients

  • The large majority of organizations said they are largely funded by individual donors
  • Together, our members are in touch with more than half a million rare disease patients!

Research capacity

  • 84% of our members are actively involved in research
    • 79% of our members are actively funding research