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!