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REPORT 16Th EULAR Autumn Conference for PARE, Reykjavik, Iceland, 15Th – 17Th November 2013

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REPORT 16Th EULAR Autumn Conference for PARE, Reykjavik, Iceland, 15Th – 17Th November 2013 REPORT 16th EULAR Autumn Conference for PARE, Reykjavik, Iceland, 15th – 17th November 2013 About the EULAR Autumn Conference: Since 1997 a dedicated conference has been held for EULAR national organisations of PARE and representatives from related organisations, which is hosted by a different country each year. This year’s Autumn Conference was held in Reykjavik, Iceland and was hosted by Gigtarfélag, the Icelandic League Against Rheumatism. One hundred and twenty nine delegates from 33 countries attended, including 33 participants from Iceland. Many of these came from the Reykjavik area, however local branches were also represented. The main theme of the conference was Healthy Ageing with a rheumatic or musculoskeletal disease (RMD) with three areas of focus; policy, campaigning and capacity building. For 2013 the criteria for delegates was amended to ensure that those attending the conference had experience, or an interest in developing one of the 129 delegates from 33 countries attended topic areas. Another change to this year’s conference was the introduction of a more interactive and workshop driven programme. With a total of eight workshops to choose 2013 EULAR Autumn Conference objectives from, each workshop was repeated allowing 1. To inspire, educate and empower delegates and their national organisations delegates the opportunity to attend four to develop and execute campaigns around the topic of healthy ageing different workshops. through: • providing expert key note speakers; The Task Force responsible for • sharing best practices; planning this year’s conference: • developing practical materials that can be adapted for national activities Anna Ageberg, PARE Board member, and meet national needs. representing young people 2. To make delegates and their national organisations aware and receptive to Maria Batziou, Past Chair, EULAR Standing the benefits of regional, European and international collaboration by: Committee of PARE • clarifying and promoting the activities and relevance of EULAR; Hans Bijlsma, EULAR Treasurer • demonstrating how EULAR can support the interests of its member Kåre Birger Hagen, EULAR Vice President, organisations on a national and local level; health professionals in rheumatology • giving insight to the “Nordic welfare model” and achievement of Nordic Frane Grubišć, 2014 Croatian team cooperation, The Nordic Reuma Council. Dóra Ingvadóttir, 2013 Icelandic team 3. To inform and inspire participants from Gigtarfélag Iceland about EULAR Lena Maria Hreinsdóttir, 2013 Icelandic team activities and empower them by participating at the conference and Einar Ingolfsson, 2013 Icelandic team organising a short meeting after the conference with all the Icelandic Marios Kouloumas, Vice President, delegates. representing PARE 4. To increase the awareness and understanding of rheumatic and Valérie Krafft, 2012 Swiss team musculoskeletal diseases as a major health issue in Iceland as well Kristín Magnúsdóttir, 2013 Icelandic team as in Europe by conducting media outreach activities and inviting key Emil Thorodsson, 2013 Icelandic team stakeholders to attend the opening, including inviting the Minister of Welfare to give the opening speech. Maarten de Wit, Task Force member Thursday, 14th - Friday, 15th Prof. Maurizio Cutolo, Dóra Ingvadóttir, Anna Lilja Gunnarsdóttir, Madame Vigdís Finnbogadóttir, November Stefán Ólafsson and Marios Kouloumas (L-R) 2 Thursday, 14th Marios Kouloumas provided a tribute November: to David Magnusson, Chair of the Standing Committee of PARE. David Delegates tragically died of cancer in October arriving on 2013, just four weeks before the Thursday Autumn Conference. His passing was afternoon marked by a minute’s silence at the start were invited to of the conference and by many fond participate in a quick- memories entered by delegates in a fire ‘speed networking’ ice breaker, book of condolences. David developed similar in format to speed dating. rheumatoid arthritis at the age of 31. Delegates were asked to provide some He joined the Swedish Rheumatism key facts about themselves prior to the Association in 1991 to learn from conference. Sitting opposite each other, others in a similar situation and soon delegates had three minutes to find out became an active member. He became as much as possible about each other a member of the EULAR PARE Board and which facts matched which person, in 2005 and was most recently Chair before moving on to a new partner. The of the EULAR Standing Committee of PARE and Vice President of the Swedish networking provided a lively atmosphere Association. David will be sadly missed by all who knew him, not only for his to the conference and was much liked tireless work on behalf of people with RMDs and his extensive contributions to and highly rated by the delegates. the Swedish Rheumatism Association and PARE, but also for his enduring good humour and enormous sense of fun. He is survived by his wife, Beryl Svanberg “I think it was a good idea as I got to and three daughters. know people whom I never talked to before. It makes you feel that you belong to the group and are welcomed.” Friday, 15th November: Iceland and Icelandic culture, including sagas where rheumatic diseases are Marios Kouloumas, Vice-President, mentioned. Vigdís was Europe’s first EULAR, representing PARE, opened the female president and the world’s first proceedings and moderated the Friday democratically elected female head plenary session. Prof. Maurizio Cutolo, of state. President of EULAR, presented the opening remarks on behalf of EULAR. Anna Lilja Gunnarsdóttir, Permanent Secretary, Icelandic Ministry of Welfare Dóra Ingvadóttir, President of addressed the delegates on behalf of the Gigtarfélag Iceland, welcomed the Ministry of Welfare. Stefán Ólafsson, delegates on behalf of the Icelandic Professor of Sociology, University of League Against Rheumatism. Madame Iceland, gave a presentation on the Vigdís Finnbogadóttir, Former Nordic welfare model and healthy ageing President of Iceland, addressed the in Iceland. Ice breaker delegates and provided a brief history of Dr Frane Grubišić, President, Marios Kouloumas interviews Maurizio Cutolo Croatian League Against Rheumatism 3 the workshop was to develop outlines of understand what problems we are trying manageable projects that would benefit to solve and to measure success. people with RMDs. Delegates were divided The project on increasing access to into sub-groups to develop different social care and services would target projects, which included self management, the public, politicians and regulators changing social attitudes, and increasing with the overarching message “It could access to social care. happen to you”. Media stunts would be The self-management project used to raise awareness such as “A day decided that everyone with an RMD at in the life of a care home resident”. One any age should have access to a self- of the barriers to healthy ageing is a lack management pathway, with suggested of esteem. To overcome a lack of self- slogans, “Achieve quality of life through belief people could be educated through self-management” or “Start early, start websites and leaflets on alternative Dóra Ingvadóttir, President of Gigtarfélag Iceland, welcoming the delegates on behalf of the Icelandic now”. Information could be disseminated ways of exercising and overcoming the League Against Rheumatism in public areas such as waiting rooms and limitations. When you have the right data also via social media. People could be and engagement, you get empowerment Marios Kouloumas conducted an trained to become “ambassadors” and – “When you win, we all win”. informal and very informative interview create testimonials or success stories with Maurizio Cutolo on the topic of and run self-management workshops. Evidence healthy ageing. Additionally, Professor Delegates agreed that it is particularly Cutolo provided a short handout with Six important to set up mobile teams who Engagement Hot Topics in Rheumatology. Dr Frane can access remote areas. Empowerment Grubišić, President, Croatian League Against Rheumatism presented a Education, starting at an early age, John O’Flynn, President of Arthritis clinician’s perspective of healthy ageing and raising awareness of the impact of Ireland, facilitated a workshop to with an RMD, which was followed by an RMDs was the focus for the changing identify how organisations can interactive session. social attitudes project, with positive communications and fun awareness motivate people with RMDs to “I especially liked the lecture by the raising activities, including celebrity adopt healthier lifestyles. Delegates Professor of the University of Iceland. ambassadors, street activities on were provided with an overview of Very informative.” awareness days, short films and media Arthritis Ireland activities including outreach. To overcome public perceptions group walking and ballroom dancing, that people with RMDs are expensive as well as how it maintains its well- Neil Betteridge, EULAR Liaison Officer, and don’t contribute, a press event supported website. Lea Salminen and Public Affairs, and Sören Haar, leader, highlighting that, “We’re all ageing”, Emmi Myohänen presented on the EULAR Brussels Office facilitated a could be held with academic, political, musculoskeletal service pop-up stations workshop on politics and healthy patient and celebrity speakers. This would in Finland, where simple but revealing ageing in Europe which commenced highlight that, with support, people with tests are used to
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