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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.
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
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
Posted in Action Plans, Building a Federation
Tagged action plan, European Federation
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
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
Posted in Building a Federation
Tagged European Rare Disease Federation
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
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
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
Posted in Building a Federation, Membership
Tagged European Rare Disease Federation
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
Posted in Building a Federation, Membership
Tagged European Federation, fees, patient organisations
Mission statement
A Mission statement describes the organization’s: Values Target Audience Core Services Unique Attributes A mission statement is a succinct statement that conveys your organization’s reason for being. Coming up with an effective mission statement is worth the time and effort. … Read More
Posted in Action Plans, By-laws, Good international practices, Statutes