EURORDIS-Rare Diseases Europe

Who we are

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 850 rare disease patient organisations from 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

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.

Our vision is to enable better lives and cures for people living with a rare disease.

Our mission is to work across borders and diseases to improve the lives of people living with a rare disease

To this end, EURORDIS undertakes activities on behalf of its members, notably in favour of:

• Empowering rare disease patient groups
• Advocating rare diseases as a public health issue
• Raising public rare disease awareness, and also that of national and international institutions
• Improving access to information, treatment, care, and support for people living with rare diseases
• Encouraging good practices in relation to these
• Promoting scientific and clinical rare disease research
• Developing rare disease treatments and orphan drugs
• Improving quality of life through patient support, social, welfare and educational services