'Nothing About Us Without Us'

Campaigners call for joined up thinking across Europe to tackle barriers for people with Rheumatic diseases

Campaigners from a pan-European rheumatology organization today called for its members and the wider rheumatology community to engage with the European disability agenda in order to strengthen the voice representing people with rheumatic diseases. Rheumatic diseases are the biggest causes of physical disability in Europe, however currently the major groups represented at forums such as the European Disability Forum are people with sensory impairments, neurological conditions and paraplegics.

Neil Betteridge, chair of the PARE Manifesto* (People with Arthritis and Rheumatism in Europe) steering group, was speaking at the 7th Annual European Congress of Rheumatology, being held in Amsterdam from 21-24 June. He said: "More Europeans – of all ages, from young children and adults to the elderly - are affected by rheumatism than any other long-term medical condition. Whilst facilitating access to treatments and ensuring that the disease area secures research funding are key priorities for experts in the field, we must also look to work closely with organizations that share similar campaigning objectives if we are to succeed in shaping policy to better support people with rheumatic diseases."

Mr Betteridge outlined problem areas such as international travel and access to the built environment and emphasised that people with rheumatic diseases face particular barriers in their right to access essential services. Most difficult to tackle is the disparity between different countries as rules and laws differ accordingly, however this could be tackled head-on by joining forces across national boundaries.

A written declaration calling on EU decision makers to recognise the extraordinary burden of rheumatic diseases was adopted as an official resolution of the European Parliament in September 2005. However Mr Betteridge, on behalf of EULAR and its PARE Manifesto, is keen to focus also on the campaign for social justice for disabled people, which is aiming to secure a disability specific EU directive to prevent discrimination across all services.

He concluded: "We must ensure that the needs and rights of people with rheumatic and musculoskeletal conditions are not overlooked. They should be allowed to participate fully in society, without having to contend with unnecessary physical or psychological barriers. By creating powerful alliances across Europe we can succeed in this".

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Notes to editors

* PARE Manifesto is the campaigning arm of the EULAR Social Leagues and represents the patient's voice in Europe. It is a pan-European project focused on improving the quality of life for the more than 100 million Europeans affected by arthritis/rheumatism. Three organisations were involved in developing the European Manifesto, a "call to action" addressing 10 major areas of concern and interest for people with rheumatic diseases, in 1999:-

  • Arthritis/Rheumatism International (ARI)
  • International Organisation for Youth with Rheumatism (IOYR)
  • European League Against Rheumatism (EULAR) Social Leagues

The European Manifesto was officially launched at the European League Against Rheumatism Congress (EULAR) in June, 2000 at its meeting in Nice. In January 2001, the PARE Manifesto was launched at the European Parliament in Brussels.

For further information on this study, or to request an interview with the study lead, please do not hesitate to contact the EULAR congress press office on:

Email: eularpressoffice@uk.cohnwolfe.com

Jim Baxter - Onsite tel: +44 (0) 7900 605652
Jo Spadaccino - Onsite tel: +44 (0) 7773 271930
Mia Gannedahl - Office tel: +44 (0) 20 7331 2325

ABSTRACT NUMBER: SP0030

About EULAR

  • The European League Against Rheumatism (EULAR) is the organization which represents the patient, health professional and scientific societies of rheumatology of all the European nations.
  • The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe.
  • Diseases of bones and joints, such as rheumatoid arthritis and osteoarthritis cause disability in 4 - 5 % of the adult population and are predicted to rise as people live longer.
  • As new treatments emerge and cellular mechanisms are discovered, the 7th Annual European Congress of Rheumatology in Amsterdam (EULAR 2006) brings together more than 10,000 experts - scientists, clinicians, healthcare workers, pharmaceutical companies and patients - to share their knowledge in a global endeavour to challenge the pain and disability caused by musculo-skeletal disorders.
  • To find out more information about the activities of EULAR, visit: www.eular.org.


Last reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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