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The Council of European Rare Disease Federations provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases.
8 basic steps to setting up a European Federation
8 basic steps to setting up a European Federation
Based on the Arrythmia Alliance toolkit 1. Find your leaders! 2. Establish your mission 3. Register as a Charity/ not for profit organisation 4. Begin fundraising 5. Begin outreach: hold patient education meetings 6. Develop a website 7. Raise awareness … Read More
Communications advice for new groups
The toolkit provides ideas, advice and practical tips to help you in communicating with the wider community, and examples of how other Patient Groups have gone about recruiting new members, planning and delivering local initiatives, supporting other local Patient Groups … Read More