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SP0148 The Network of Parents with Children Who Have Arthritis in Germany
  1. B. Markus
  1. Deutsche Rheuma-Liga Bundesverband e.V., Arnsberg, Germany

Abstract

The German League against arthritis contents of 16 regional associations (one for each region in Germany) and 3 membership associations (Bekhterev's disease, Scleroderma, Lupus erythematosus).

There are parent groups in all of the regional associations. They meet to get and give information, discuss problems, give personal advice, change phone numbers/addresses and emails and meet for weekend-activities with their families. Some parents voluntarily support the associations. The parents elect a parent representative for their association.

The elected parent representatives meet once a year at a workshop or alternately at the BUKO (the German conference of parents and young rheumatics). At the BUKO they work out political demands related to rheumatism. And they elect a Committee and one nationwide parent representative.

There a few parents, who voluntarily work a telephone-hotline especially for parents to give information and support. Other parents answer questions in the forum of the homepage of the German League against Rheumatism.

The committee contents of 5 parents who support the German League against Rheumatism with writing reports for the magazine “mobile”, give statements on political issues related to rheumatism, organize the national meetings (workshop or BUKO),the design of the homepage and create the newsletter, which is sent to all registered parents in Germany.

The nationwide parent representative represents all German parents with children who have arthritis in national or international meetings, congresses, social organizations and of course maintains contacts to all other parents via email or phone.

This way a secured connection between and to all parents in Germany who have children with arthritis is guaranteed.

Disclosure of Interest None declared

DOI 10.1136/annrheumdis-2014-eular.6111

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