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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.
Creating the structure
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
Look for other National Groups
The decision to try to organize an European Federation on a Rare Disease, begin normally from one of the National Groups, looking for having a bigger visibility at the European level. In most of the cases, this group has relations … Read More
Is there a “best” country to set up the Pan-European organisation?
Questions It would be lovely to have an EU-recognised system, that gives non-profit status Europe-wide to associations. Right now, that is not the case. This is exactly one of the first questions that comes up in our Rare!Together project, to … 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
Posted in Creating the structure, Sharing Experience
Tagged Best practice