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 and working with their Medical Centres and other professional organisations. The toolkit also contains a range of template resources to aid your communications activity, including a press release, and website and newsletter copy.
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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.