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 wit, where to register our European Federation.
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- Is there a “best” country to set up the cross-European organisation?
- And why is that one country the best, especially in legal terms?
- Could the host country simply be any country with a good strong national organisation?
And answers
- To date, the answer is, either in Brussels, for the address, for the easier connection to EU organisms, and for central location. But all this is non-technical, ie, the EU does not recognise any group better because they are in Brussels, and as long as they can somehow show that they have members in half + 1 of member countries and can be considered “representative” of some certain population.
- Or the other answer (the one that many groups use) is to locate in one country where there is a strong local group that can do the majority of work that needs to be done by the European group.
- The third option right now is a hybrid whereby the official registration is in Belgium (registration there is maximum 1750 euros) for address and easy reconnoitering ability with Europe (even if the Belgian group is not particularly strong) and the Secretariat (where the European association’s work gets done) happens where the workers are, Germany, or UK or wherever.
Here is a list of the countries where European Rare Disease Federations that we know have registered in:
| Alfa Europe | Germany |
| CF Europe | Germany |
| Debra International | Austria |
| EAMDA | Slovenia |
| EuMGA | UK |
| Euro Ataxia | Belgium |
| Euro HSP | France |
| European Chromosome 11 Network | Germany |
| European Gaucher Alliance | UK |
| European Haemophilia Consortium | Belgium |
| European Myeloma Platform | Belgium |
| European Waldenström Network | Netherlands |
| Fabry International Network | Belgium |
| Federation of European Williams Syndrome | Belgium |
| FESCA | Belgium |
| HAEI | France |
| IAPO | Netherlands |
| IPOPI | UK |
| Myeloma Euronet | Belgium |
| OI Federation Europe | Netherlands |
| PHA Europe | Austria |
| SMA Europe | Germany |
| TIF | Cyprus |
As you can see, Belgium is the seat of 7 European Federations, followed by Germany (4), the UK (3) and France (3)
COSTS
We have a far from exhaustive list, but right now, we know the registration fees in these countries:
Poland – approx. 1000 euros
Spain – 21-35 euros
N Ireland – No fee
Estonia – 250 euros
Italy – 1500-2500 euros
Greece – No fee
Lithuania – 350 euros
Norway – No fee
Netherlands – Can be free
Romania – 300 euros
Austria – 20 euros