Membership of EURORDIS
EURORDIS works to build a strong pan-European community of patient organisations and people living with rare diseases.
Join the European Rare Disease Network
Why become a member of Eurordis? By becoming a Member of Eurordis, you will: Join an active Pan-European rare disease community of dedicated people facing similar i
The Council of National Alliances (CNA)
The CNA was established by Eurordis. This structure allows national representatives of rare diseases to work together on common European actions.
Members’ News and Announcements
Eurordis member groups are welcome to send news and announcements to be published on this page.
A new Network for European Rare Disease Federations
Today 25 European rare-disease specific federations are members of EURORDIS, and more informal or emerging federations are currently involved in EURORDIS' activities. Their incr
Unity and empowerment for rare disease patients
The World Bank has defined empowerment as “the process of increasing capacity of individuals or groups to make choices and to transform those choices into desired actions
Patient organisation or not? The EMEA defines its set of criteria
Has your patient organisation ever thought of being involved in some of the European Medicines Agency's (EMEA) activities? If so, you nee
Member profile: Alliance Sanfilippo
'My husband and I had never heard of Sanfilippo syndrome before the doctors told us in July 2005 that our dear and beautiful Ornella was suffering from the disease.'
Bike riding in Australia to raise funds for research
Over forty people, some of them visually impaired, have recently completed a 700 kilometre bike ride across South-Eastern Australia.
Help for today and hope for tomorrow
The motto of the Jennifer Trust for Spinal Muscular Atrophy in the UK is help for today and hope for tomorrow
Battling paediatric cancers
SIOPE is a European organisation promoting optimal standards of care for children and young people with cancer.
