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