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International
Organisation of Youth with Rheumatism
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Update and latest news about the Manifesto
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by
Michael Bernardy, chair of the Manifesto Steering Group The European Manifesto stands for the first time ever for the common voice of more than 103 million people in Europe who live under chronically arthritis conditions. The European Manifesto lists the ten most important needs to ensure/improve quality of life for people with arthritis. This is because it was created by people with arthritis for people with arthritis. It must be understood as a tool that both individuals but also national and international organisations can focus on regarding social, political, and medical aspects. The European Manifesto has successfully been launched on the occasion of the EULAR Congress 2000 in Nice. In the meanwhile it has been presented at the following forums:
The European Manifesto always raised a lot of attention. Since beginning of this year an International Steering Group co-operates together to develop the Manifesto on international level. It consists of Michael Bernardy (Germany) as chair, Robert Johnstone (UK) as representative from ARI, Dorte Ronsler (Denmark) and Catherine Gibb (UK) as representatives from IOYR, Gisela Dalvit (Switzerland), Marjan Hudomalj (Slovenia), Lena Öhrsvik (Sweden) and Neil Betteridge (UK) as representatives for the EULAR Social Leagues. With the board elections of the IOYR assembly during the IYC in Norway, Dorte Rønsler became chair of the IOYR board. As Lucinda Blauw (Netherlands) retired to be representative for IOYR in the Steering Group, Dorte took over from her to be a member in our group. The Steering Group wishes Lucinda all the best for her future plans and thank her for all her support and excellent co-operation during the last years. We cordially welcome our new member Dorte and look forward to having a successful and long co-operation! The Manifesto Steering Group is meeting three times a year to discuss future activities and the next steps of the implementation. The first meeting 2001 was held in Bonn (Germany), the second one in Prague during the EULAR congress and the last one for this year will be in December in Spain. The Steering Group has invited the Spanish PARE Representative, Francisca Carríon and the manager of LIRE, Julio Aguado Canamares, to report about the situation of people with arthritis in Spain and about their experiences with the Manifesto implementation. To be able to implement the Manifesto in all European countries this initiative needs the support of national organisations and individuals. Since January 2001 a network of PARE Representatives has been established in 24 countries in Europe so far. We invite everybody who would like to support the Manifesto in his/her own country to get in contact with the co-ordinator of the European Manifesto, Birte Glüsing, who is working at our secretariat in Bonn, e-mail bv.gluesing@rheuma-liga.de She would be happy to put you in contact with the PARE Representative of your country to ensure that the work is co-ordinated and there are no double efforts. On the occasion of the celebrations around the International Arthritis Day on 12th of October 2001, Birte has been invited by the Latvia Rheumatics Association to join their interesting programme and to give a presentation about the Manifesto. The Latvia Rheumatics Association is presenting the translation of the Manifesto into Latvian on this day. Regarding the translations that are yet existing there has been a considerable progress during the last months and the Manifesto Steering Group is very pleased that at least the single page is now available in the following languages: French, English, German, Dutch, Danish, Polish, Hungarian, Portuguese, Spanish, Slovenian, Latvian, Lithuanian, Greek, Czech and Icelandic. Translations into Swedish, Norwegian, Arabic and Italian are on the way. If you don’t find your language above, please don’t hesitate to contact Birte and she will try her best to help by arranging a translation. The Steering Group appreciates that the Manifesto is a main issue on the International Arthritis Day in so many countries, e.g. Iceland, Austria, Yugoslavia, Norway, Sweden, Finland, Latvia, Denmark etc. If you are interested in more information about the or the Manifesto itself we invite you to have a look at our new PARE Website: www.PAREmanifesto.org. At the moment not everything is ready yet but under construction. If you miss something we hope that we can provide you with the complete information as soon as possible. October 2001 |