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PARE0012 Building Patient Led Organisations – An Example of Hungary
  1. J. Ortutay,
  2. E. Rozán
  1. Hungarian League of Patients with Rheumatic Diseases, Budapest, Hungary

Abstract

Background The Hungarian League organised a very successful campaign for people with rheumatoid arthritis in 2013. The aim of the campaign “Take a paintbrush” was to raise awareness of this severe disease and to help people with rheumatoid arthritis (RA) to get closer to each other and to their health care providers by using the tools of graphic art. In eight cities of Hungary painting together the world's biggest postcard, which was awarded by the Guinness World Records, resulted in a positive teamwork experience for all participants: people with RA, doctors, nurses, family members, friends and media stars. After this campaign authors decided to make use of it and motivate the participants to build patient organisations in those towns, which did not have any by this time.

Methods By organising cultural programs and meetings where the good practice was reported – by patients leading clubs and organisations country-wide – and the local problems were discussed, people in four towns decided to form local branches of the Hungarian League. They were supported by the board of the league, and a generous sponsor too. All of them are patient led organisations.

Results Among the first activities they participated in the World Arthritis Day 2014 campaign in Budapest, where little origami ships with thoughts of RA patients were setting afloat in a fountain with thermal water. Another new member of the Hungarian League is the Association of Rheumatic Patients for Targeted Therapy, founded in 2014. This patient led organisation is collecting people receiving biologics, they support them by education program about this very special therapy, help in self management, overcoming the fairs about side effects, and raising awareness of RA. The Hungarian League utilizes the beneficial effect of the literature to build patient led organisations by organising meetings in several cities to show people example and solution by the help of books written by patients or telling stories about people with chronic diseases (RA). These books with biblio-therapeutic method support them to understand their situation, their needs, to cope with their problems, and if it is possible, to build an own patient led organisation.

Conclusions The board of the Hungarian League aimed to modify the attitude of its member associations, encouraging them to have more people with arthritis/rheumatism in their board: helps them by educating board members how to set goals and work active for others. This work is supported generously by the EULAR-PARE Standing Committee, the good practice of other European Leagues, the training workshops of the Annual Conference, and the training course of the European Patient Forum.

Disclosure of Interest None declared

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