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)
Experienced
- 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!