Improving the capacity of Rare Disease Patient Organisations to build and operate European disease-specific Federations.
Rare Disease Patient Groups in Europe face obstacles in carrying out effective work because the rarity of the disease they support means that they represent small numbers of patients in any one country. Networking on the national level, while vital, needs to be complemented with international networking.
Many patient organisations have contacted Eurordis asking for help in the creation of a European Network/Federation for their disease. Their questions and problems are manifold, ranging from the status of the future organisation (charity, association, foundation…), to the country where best to establish the organisation, from how to raise funds for a European organisation to how to tackle the language problem, etc.
Eurordis is very keen to support the establishment of European disease-specific Federations, as their work can greatly improve the life of patients by uniting forces, sharing knowledge and experience, fostering European research projects, raising awareness, etc. European Rare Disease Federations can also speak with one voice for their disease at the EU level and in specific institutions, such as the EMEA, the European Medicines Agency.
There is also a need to archive success stories and make them available to other patient organisations who are considering embarking on the creation of a European Federation.