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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.
Sharing Experience
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
International Charities under English Charity Law
Sharing experience – Why Become an English Charity? Since the MGA (Myasthenia Gravis Association) became a member of EURORDIS I have had several discussions with colleagues from other patients’ groups about how best to achieve a recognised legal status as … Read More
Sharing experience – IPOPI tool kit for patient organisations
The IPOPI National Member Organisation Skills Manual has been developed to help new organisations to understand a little of what lies ahead and – maybe – to encourage better established organisations to look again at their own organisation. This great … Read More