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The EULAR Standing Committee for Social Leagues has grown both in size and activity during the past few years, thanks to the active involvement of all the members. EULAR Social Leagues have a shared goal of improving quality of life and services for people with arthritis/rheumatism. They are now more active than ever before, participating in the remarkable improvement of EULAR activities with an increasing partnership.
Profile within EULAR meetings
EULAR Social Leagues have an increasing profile within the EULAR meetings. After the meetings in Geneva in 1998 (three days joint programme for health professionals and social leagues) and Glasgow in 1999 (one day stand alone programme), the Social Leagues Programme Committee planned a three day programme for the first annual EULAR Congress in Nice, including one shared day with the health professionals. The programme was well received and attended. The same format was decided for the EULAR 2001 Congress in Prague, with an additional full joint session, on the theme “Communication and partnership”, involving not only social leagues and health professionals but also rheumatologists. We are preparing more full joint sessions in the future.
In Nice, we paid particular attention to the question of access for people with disabilities, which is mandatory for the congresses. During the opening ceremony, one of the official speakers was a woman with arthritis; we hope similar participation will continue over the following EULAR Congresses.
The European manifesto for the third millennium
This manifesto was announced during the opening ceremony of the congress in Prague. This initiative had been successfully launched during the congress in Nice. The manifesto was developed by the EULAR Standing Committee for Social Leagues, together with representatives from Arthritis and Rheumatism International and International Organisation of Youth with Rheumatism. It is aimed at determining what the society can do to improve life for people with arthritis/rheumatism. This declaration of the rights of people with arthritis/rheumatism establishes 10 “calls for action” for meeting the growing challenges presented by arthritis/rheumatism, which will form the basis of the social leagues programme during the annual EULAR Congresses, as from EULAR 2001 in Prague. The manifesto is now in the next stage of its development, which includes increasing administrative support and providing translation for each country.
Stand alone conferences
The EULAR Social Leagues also organise annual stand alone conferences—for example, the worldwide conferences of arthritis and rheumatism patient societies organised by the Social Leagues of EULAR in collaboration with Merck Sharp & Dohme. After Amsterdam and Madrid, the third conference was held in Ljubljana on 14–15 October 2000. We had a very successful two day programme with the themes: “Developing your organisation” and “Disability politics and arthritis”, with a convener for each theme (Barbro Allardt Ljunggren and Michael Bernardy). Sixty nine patient society representatives and 23 countries were represented. Most of the speakers and chairpersons were again people with arthritis/rheumatism.
We are planning the fourth worldwide conference “Arthritis patient on the move 2001”, to be held early November 2001.
EULAR Social Leagues award the Edgar Stene Prize to a person with arthritis/rheumatism for an essay on a topic chosen by the leagues. Historically, the prize has been awarded every four years. From 2001, it will be awarded every two years, during the annual congress; the EULAR Executive has increased the amount to 3000 Swiss Francs. In 2000, we had 39 entries (15 in 1999). The winner was Ms Frances Bell (UK) for her wonderful essay, “The long way to acceptance of my chronic disease”.
EULAR Social Leagues also have several other projects, including participation in the Bone and Joint Decade initiative (International Steering Committee and National Action Network activities); participation in the ILAR Congress in Edmunton; a booklet on social leagues, with input into the EULAR web site; training courses for social leagues and awards for educational projects, made possible with EULAR grants.
I would like to express heartfelt thanks to all the committee members, to Bruno Van Albada our past Chair, to Ms Sophie Edwards our secretary, to Fred and Elly Wyss and Eugenio Plozza at the executive secretariat, and to the executive committee members for their warm support.
In the future, EULAR Social Leagues will continue to grow in size and influence, and continue with collective campaign work through its manifesto and the Bone and Joint Decade initiative. We will examine our aims and our activities to ensure that we continue to meet the needs of EULAR, of our members, and of people with arthritis/rheumatism.