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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
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
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
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