EUROPEAN ORGANISATION FOR RARE DISEASES

Non-governmental organisations, platforms and networks and similar

EURORDIS-Rare Diseases Europe is a patient-driven alliance of over 1130 patient organisations (POs) active in the field of rare diseases (RD) from 77 countries. It represents the voice of an estimated 30 million citizens in the EU. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
EURORDIS vision is to enable better lives and cures for people living with a rare disease and its mission is to work across borders and diseases to improve the lives of people living with a rare disease. To this end, EURORDIS-Rare Diseases Europe undertakes activities on behalf of its members:
• Raising public awareness on RD
• Empowering PLWRD and RD patient groups and strengthening the capacity of rare disease patients’ representatives
• Advocating for RD as a public health priority and for national and EU-level

93272076510-87

Paris

FR

civil_society

ASSOCIATION