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 with other similar groups in Europe, but, in some cases, there is only a few number of groups.
If your disease is a very rare one, it is possible that there are no national associations in most of the European countries.
The first task is to search for others groups in Europe willing to participate in the Federation.
Ways to do it
There is some ways for this search:
- The Orphanet database www.orpha.net allows searching by disease for patient organisations across Europe by disease (nearly 6000 diseases are referenced on this database)
- The EURORDIS list of National Rare Disease Alliances. You can write to all these Alliances asking them for national groups related to your disease.
- And, of course, Internet search. You can make a search in Internet, trying to find other groups related to your disease, and contact directly with them. The main problem in this case will be the language, due to the fact that the same Rare Disease can have different names in each country. As an example, the HSP (Hereditary Spastic Paraplegia) is called PEF (Paraparesia Espastica Familiar) in Spain, Strümpell-Lorrain disease in France, and so on…
- You can ask your National Focal Point to contact the others national Focal Points in Europe in order to search for patient groups in their distinct countries.
Here is an example of a message asking for other groups via the National Focal Point or the National Rare Disease Alliance:
The ____, ____ and _____ groups of XXX (X___ X___ X___ or _________Disease) are trying to set up a European XXX Federation.
We are contacting you today to see if there might be an XXX patient group in your country? We would be very obliged if you could do a search for us.
If there are not any XXX groups in your country, can you tell us if there are XXX patients in other rare disease groups (like ______, _____. etc)?
If there are no XXX patient groups, we would be interested in getting to know XXX patients (via medical centers, cohorts, etc), to see if they might consider the possibility of joining an existing XXX group from another nearby country, or to start a national group.
Please let us know of any addresses, contact information, etc of groups or individuals who might be interested in the rights and needs of XXX patients, or related disease areas. We would love to talk with them about the future of working together on a European level.