EURORDIS

The voice of rare diseases in Europe

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 910 rare disease patient organisations in 72 countries. Together they are the voice of 30 million people affected by rare diseases throughout Europe.

EURORDIS’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level. They do so by uniting, expanding and reinforcing the rare disease movement of patient organisations and patient advocates around the world.

In total, the organisation federates 910 patient organisations representing over 4.000 rare diseases covering 72 countries. They contribute to position papers, fact sheets and other publications about rare diseases.

EURORDIS is carrying out work in the following fields:

• Advocating for patients
• Healthcare, social policies and services
• Medicines and therapies
• Research policy and actions
• Patient empowerment and training
• Information and networking