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