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Parents of children with Juvenile Idiopatic Artritis (JIA) in the Netherlands
In Holland there are about 2000-3000 children with JIA who are being treated in hospitals. There are more children with JIA, but they donít have any treatment at this moment or the disease is still perceived.
In February 1998 the JIA Vereniging Nederland started with 57 members. The past years we have grown very strong and we have now about 300 members.
The aims of our association are:
ō Tot benefit and improve interest. The association has an ombudsman who helps our parents with their personal problems. Meetings about new rules, symposia about JIA ad all kind of other meetings are visited by members of the board. We also work together with the NVKR (Dutch Association for Children Reumatologists), Het Nationaal Reumafonds, who collects the money, and with the ReumapatiŽntenbond, the coordinated association for persons with arthritis.
ō To promote the contact between companions in distress for parents and for children. Every winter we organize a day for families with in child with JIA from 0 to 6 year. It is a sociable day for parents and children with a lot of time to exchange experiences and ask questions about JIA. We also organize weekends for children from 6 to 12 year and from 13 to 18 years. During those weekends there is a lot of time for parents and the children to exchange experiences. In 9 regions of the country we organize an evening for parents where they can talk about the problems with their child. Subjects to talk about are: School, medicines, treatments and supplies.
ō To give information about JIA, supplies, etc. to parents, children en others. Four times a year we distribute Het contactblad. In this paper we give information about JIA, amendments of the law, medicine and activities. Together with Het Nationaal Reumafonds we write little books with information about JIA. Now we are working on special books for children from 0 to 6 years and children from 6 to 12 years. We are also working on a book for parents with a lot of information about the disease. We hope to finish this at the end of 2005. On our website www.jeugdreuma.com parents can read about JIA, medicines and activities we organize. Every two years we organize a information day for parents with a child with JIA.
In spite of all the information we give, parents in Holland still have problems, especially at school. Some teachers are not able to find the right way to coop with a child with JIA. Also classmates find it difficult to understand why a child with JIA can come to school one day on skates and the next day in a wheel chair.Children who are going to secondary school have even bigger problems, because they donít have only one teacher to deal with. Good information for schools is very important.
To find a lot of information about JIA we have joined the ENCA . With the other participating countries we learn about the treatment of JIA in their countries and about the activities they organize.
We hope that a lot of other countries will join the ENCA, because together we are strong.
President of the JIA Vereniging Nederland
3961 LN Wijk bij Duurstede