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Who we are

A unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries

EURORDIS – Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 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

EURORDIS’ vision is a world where all people living with a rare disease can have longer and better lives and can achieve their full potential, in a society that values their well-being and leaves no one behind.

Our mission

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

To achieve their full potential, people living with a rare disease need to be:

– Recognised as equal citizens with their rights fully respected
– Diagnosed timely and accurately
– Supported with state-of-the-art medical and social care, or cured
– Included in society in all aspects of life and enabled to live independently.

Our values