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JIA in childhood is a severe disease which changes the life of whole the family.
There are a lot of new tasks and the daily life is formed by consultations or therapies.
25 years ago the parents of children and juveniles with JIA noticed that medical help alone is not sufficient. This was the reason for founding the first parent group in 1980 in Bavaria. Parents were looking for more information and above all for contacts and possibilities for exchanging experiences with families who have the same problems.
By now in Germany there are 16 local parents speakers (one for each federal state of Germany) and a great number of local groups within the states
All together about 120 parents in order to give emotional and practical support to other families with children with rheumatic diseases. A lot of information materials, individually counselling, regular meetings to exchange experiences as well as patients/parents education and family weekends together with paediatricians and health allied being specialised in paediatric rheumatology are offered. Assisted by some professionals, these groups are run by parents, voluntarily under the roof of the “Deutsche Rheuma-Liga” (German Rheumatic League) which is the largest national voluntary association within Germany (about 250.000 members). With our help we hope to show to the families a way how to live with this severe chronic arthritis in childhood.
There is also special advisory boards (meeting and information point) in two childrens’ rheumatism centres and a national telephone advisory running by specialised parents, the so called "Rheumafoon“ as well as the delivery of a special newsletter every three month.
In order to change experiences world wide and to make call attention to families with rheumatic diseases beyond the own country seven European associations met in Paris and founded ENCA, a European network of children with rheumatic diseases.
We are hopeful to motivate a lot of more countries to get member of our organisation.
Parents of children with rheumatic diseases