About the organization
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 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 the quality of life through patient support, social, welfare, and educational services
Mission : EURORDIS' mission is to build a strong pan-European community of patient organizations 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.
Vision : Improve the quality of life of all people living with rare diseases in Europe
Badges earned
Website
Address
96 Rue Didot 75014 Paris, France
People
Initiatives
Expert Patient and Researcher EURORDIS Summer School
PE Stakeholder Expectation Matrix
SYNaPsE Patient Engagement Global Landscape, Expert Network and Repository
Co-creation of the Patient Engagement "Meta-Framework"
Patient engagement in the regulatory submission phase
Events
18
Jun02:00 PM
18
Jun02:00 PM