Building a 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

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Action Plans

Actions plans are the specific means by which objectives are accomplished. They incorporate 5 factors: 1.    The specific step or activity/action. 2.    The person who will be held responsible for seeing that each step or action is completed. (Quite often … Read More

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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

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Headquarters/Location

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

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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

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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

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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

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Membership – is it organisational or individual?

The question There are various possibilites. Both organisational as well as individual membership have their positive and negative sides. Organisational membership may be more ” powerful” while individual may be faster in terms of voting and moving forward on projects … Read More

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Membership fees

Are membership fees necessary ? The membership fees promote a sense of shared ownership (John Dart from DEBRA) Membership fees of sick persons are not necessary. Membership contributions of each national association can be useful. (Rudolf Kleinsorge from HSP Europe) Membership … Read More

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No European statutes for associations

In the EU, the legal enablement of associations and charitable organisations occurs in the national legislation of Member States and thus stops at the borders of those countries, forcing nonprofit organizations that work across borders to grapple with different national legal and regulatory regimes. Read More

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