European Organisation for Rare Diseases
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