Different aspects and considerations concerning the creation or the decision on joining a European Network

Introduction

Over the years an increasing number of European umbrella organizations for specific disability groups has appeared. The history of these federations seems to be quite different, depending on the size of the group, the economical possibilities, the objectives of the creation and others. Due and thanks to modern communication tools and technologies, people and patient groups can easier get into contact with each other and cooperation has become much easier, less time consuming and expensive.

The following text tries to figure out and list up some important questions around the creation of a European Federation or the decision concerning the membership in an existing European network.

Intention

If a small group of national rare disease organisations is considering the creation of a Federation or a national organisation needs to decide about joining such a network, it is strongly recommended to put some work into the discussion of and an agreement on main intentions for this. The question of creating or joining such a Federation depends very much on the desired goals of this step forward.

Objectives or possible advantages of a European Federation

• Contact between people from different countries and various cultural backgrounds sharing the same special disability
  • learning from each other – for daily living and other issues
  • giving advice and support
  • making friends
• Collection and publication of information about the disability on an international level
• Collection of data (addresses, information on different structures or procedures of national organizations etc.)
• Common website + networking – “together we’re strong”!
• Cooperation with, networking for and training of medical professionals: Patient networks are able to enhance cooperation of professionals who did not work on common projects earlier
• Setup of common projects (like youth exchange,  summer camps, workshops, consensus meetings and conferences)
• Creation of common standards of care, rehabilitation and treatment
• Centers of expertise – on a national or European level (Networks of Centres of Expertise)
• Political representation of common interests on European (or international) level
• Promotion of research on all aspects of the disease
• Transfer of knowledge and equipment, access to treatment and support for people with the rare disease in poorly developed countries
• Support for small national groups in the process of setting up an organisation
• Exchange of “best practise examples” and guidelines for certain procedures (how to do public relation, fundraising, organize a conference, ….)
• Collaboration with the European Medecines Agency, which only involves European federations

• Possible financial support from the European Commission, only granted to European umbrella organisations

Possible disadvantages, problems with or reasons against a Federation

• If the main reason for the creation of a Federation is the contact between individuals, it might be easier and advisable to join and use other existing networks like “Facebook”, discussion groups or mailing lists on the internet etc.
• If the main objective is to work on a European political level, perhaps this could be reached by joining and being active in an umbrella organization like EURORDIS (European Organisation for Rare Diseases) and others who represent different national groups of disabled. The possibility of reaching political goals is maybe better as a part of a larger organization – as a second step the European network could and should join that European umbrella organization!
• Economical problems – a European Federation will need financial resources, the access to external subsidies will most probably be difficult, especially during the starting period. — This will result in the need to ask the national members for economical support of the Federation’s operational costs, e.g an annual membership fee which could be a rather big burden for small national organizationsCosts to attend annual meetings, workshops or European conferences are high and could be too high for certain groupsLanguage barriers: problems to use a common language and to find national representatives with the according language skillsLack of human resources: as in general volunteers are rare, the creation of an European umbrella might be difficult due to the lack of a competent and capable representative

This shows how important it is to be clear about the intentions.