by Lucinda Blauw

After the Board meeting in Haraldvangen in March, five members of the board did meet during the EULAR Congress in Prague in June. There they talked about the last things concerning IYC and the general assembly.

News about the Manifesto
The latest news about the ‘People with Arthritis/Rheumatism in Europe Manifesto’ has been presented for the press in Prague, Czech Republic in June 2001, during the EULAR Congress. In the months before an audit (research) was conducted to gain information about the different organisations for people with arthritis/rheumatism and the level of health service in Europe. This information is going to be used as a basis against which the Manifesto initiatives and efforts will be measured

Right after the EULAR Congress the steering group met and discussed how to promote the Manifest in the different countries in Europe. One of the ideas is to set up a mentoring system in which the members of the steering group will take responsibility for certain countries.

Another project will be the Manifesto website, which will be launched at the International Arthritis Day – 12 October 2001.

And presentations will be made during the International Youth Congress in Norway - July 2001, the meeting of Arthritis & Rheumatism International in Canada – August 2001, and hopefully also at a meeting of the Bone and Joint Decade.

The Manifesto is already available in a lot of languages; please check www.ioyr.org for more information.

EULAR
The board of IOYR was represented in big numbers at the EULAR-congress in Prague in May 2001 thanks to a generous sponsor gift from Pharmacia.

Vilma, Catherine, Lucinda, Georg and Dorte did all have the possibility to talk with people from organisations from all over Europe (and other parts of the world) to inform them about IOYR and tell them the latest news about IYC 2001. A lot of good contacts were established.

The members of the board also gave information about the Manifesto for and by people with arthritis/rheumatism in Europe. They helped at a stand at the congress where it was possible to get information and contacts about the Manifesto. Many people visited the stand and showed great interest.

In the beginning of the congress there was a press-briefing about the Manifesto and besides that Catherine and Lucinda together with other members of the Manifesto-steering-group had speeches both at the Social Leagues Programme and at the Scientific Programme about the Manifesto. Very many and good possibilities to spread the information.

The Social Leagues Programme was set up around the ten themes from the Manifesto. During the first day the themes were ‘To develop and recognise national and international organisations of people with arthritis/rheumatism’, ‘Disability politics – Living without barriers’ and ‘Providing fully accessible education and work’. During this day Catherine had a speech about her personal experiences in education and work. She told about both negative and positive things, with the main point that it is often other peoples thinking and attitude that makes it easy or difficult to have a job or get an education if you have rheumatism. You can be positive yourself, but if your surrounding makes it difficult for you it might be impossible to get an education or a job. If your boss and colleagues on the other hand are interested in making things easier you will also be a better employee if you don’t have problems concerning your rheumatism at work.

The program of the second day was a joint session with the health professionals and the last part also with medical / research colleagues. The themes of the day were ‘To ensure doctor’s and allied health professional’s awareness of people with rheumatism/arthritis’ and ‘Communication & Partnership’. The lectures were about the importance of a good relationship with a rheumatologist and a therapist – from a person with arthritis point of view, the importance of a good relationship with a person with arthritis – from a doctor’s and a health professional’s point of view, the training of doctors by patients within the ‘Patient Partners’ project, the priorities of patients at their first consultation, the influence of patients on health care and social care, the partnership in a multidisciplinary programme, etc.

The last day was about the activities of the social leagues, now and in the future.

Published in Newsletter no. 6, July 2001