Rare!TogetherMany rare disease patient organisations face obstacles to carrying out effective work because the rarity of the disease(s) they support means that they represent very small numbers of patients in one country. Networking on the national level, while vital, must be complemented with international networking. Over the years, numerous patient organisations have contacted EURORDIS 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…), the country where best to establish the organisation, how to raise funds for a European organisation, or how to manage language differences.

EURORDIS created the Rare!Together programme to assist the process of creating, operating, and managing European Rare Disease Federations. The Rare!Together website serves as a guide to establishing and developing a European rare disease federation, providing best practices and a tool kit for patient organisations considering setting up a Federation, as well as helpful information for established European federations on a variety of topics, such as fundraising. European disease-specific Federations can greatly improve the life of patients by uniting forces, sharing knowledge and experience, fostering European research projects, and raising awareness.  

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Page created: 23/07/2013
Page last updated: 06/11/2014
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases