Behçet’s International is a new organisation that wishes to co-ordinate Behcets patient groups initially in Europe then in the wider International scene.
Currently groups are started by patients as a response to the lack of information available locally and via the internet. The groups by definition are run by people who are ill and therefore the growth and ability of the groups is restricted in the early stages by this lack of focus. This situation can continue for some time with the group limping along making some progress but invariable either imploding or just being a group of friends who meet infrequently.
Our aim is to help the groups to become established, train them with the skill necessary to develop both income and infrastructure to become effective for patients and clinicians in their local area. The aim is not to run the groups for them but to give them the skills to become effective locally and to be able to sustain that effort to grow.
This work is not unique to Behçet’s other groups need this work and the skills can be passed on thus developing a patient infrastructure to the benefit of many groups and the health system in general. Several countries can be covered by central training and then with local focus on that particular countries needs whether that be the health coverage in general or the social situation of patients and families groups can become effective in their own right.
The UK has a lot of experience with a highly developed charity structure that whilst not mirrored in other countries can be a model for group development. Charitable status is not essential to many small groups but the organisational planning that goes into the basic infrastructure of these groups can be applied regardless of governmental and social restrictions, the formulae is adaptable to cater for these variations.
Eurordis has been trying to expand its help to emerging groups and this plan is designed to use the skills already identified and develop them towards self-sustainability for each country that wishes to take part. We would aim to use the experience of International groups formed with the help of Eurordis as a model to set up Behçet’s International.
Thus the seed corn funding of sponsors at this development stage can truly be considered the catalyst by which groups become established and effective, a multiplier effect that should be recognised and rewarded.