EURORDIS Rare Diseases Europe

Curriculum vitae

The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. 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, and - directly or indirectly - to fight against the impact of rare diseases on their lives.

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

Web: