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EURORDIS – Rare Diseases Europe

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.


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. EURORDIS' 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.


Please find more information on EURORDIS' website.




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ERN CRANIO is funded by the European Union. The content of this website represents the views of the author only and it his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Health and Digital Executive Agency (HaDEA) or any other body of the European Union. The European Commission and the agency do not accept any responsibility for use that may be made of the information it contains. 

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