Eurordis - Rare Disease Europe

Between July and September 2024, EURORDIS surveyed its 1085 full and associate members, receiving 140 valid responses across 31 countries.

The report highlights how patient organisations continue to play a vital role despite limited resources, face growing demands from patients and policymakers, and experience increasing financial pressures.

Findings will help shape EURORDIS’ membership engagement strategy and advocate for stronger support for rare disease patient groups.