EURORDIS represents the voice of people living with a rare disease. As a patient-led organisation, we play a central role in advocating for policies and initiatives that improve the lives of individuals living with rare diseases. Working in close collaboration with our members, we have been instrumental in shaping existing legislation and setting the direction for care and treatments for people living with rare diseases in Europe.
Where we work
Our work is focused on the European, national, and international levels. While the number of individuals living with a rare disease collectively is high, patient populations for each of the 6,000 rare diseases are low, and patients are often scattered across countries. Thus, the most effective strategies for rare diseases are cross-border. Europe provides a unique opportunity for the rare disease community to create the critical mass of patients, experts, knowledge, and resources necessary to improve the lives of those living with rare diseases and adds high value to national efforts.