Background Lupus patient organizations have a significant role to play in healthcare. They are becoming increasingly important stakeholders in political and medical healthcare decision-making processes. Effective national patient organizations provide advice, education, and support to people living with lupus, their families and healthcare providers. LUPUS EUROPE is an umbrella organization of national lupus groups in Europe. At the onset of a new strategic period it was necessary to assess member groups' capabilities before initiating development initiatives.
Objectives To identify the different structures and capabilities among European lupus groups.
Methods An online survey was distributed to validated contacts within the 22 member countries of LUPUS EUROPE (24 groups). The survey was divided into four sections (i) group aims, structure and funding (ii) resources and network (iii) the situation for people living with lupus in the country (iv) the lupus group needs and wishes in capability building nationally and on European level. Questions offered single answer, multiple response or commentary.
Results 14 groups (58%) responded from Belgium (2), Cyprus, Denmark, Finland, Greece, Italy, Iceland, Netherlands, Norway, Spain, UK, Sweden and Switzerland.
Key results included:
13/14 groups have an elected board of volunteers, 11/14 are run by volunteers
Six groups reported having national offices/secretariat function and six groups do not have an office
10 of the responding groups only represented people living with lupus
9 of the 14 groups are affiliated with the arthritis and/or rheumatism associations in the country
12/14 groups cited membership subscriptions as the main source of funding
5/14 groups have an established medical advisory board mainly involved with educational activities on lupus
Lack of lupus awareness amongst doctors and time to diagnosis were cited as major challenges for people with lupus in the country
7 of the groups reported SLEDAI used nationally as a measurement index for clinical disease activity assessment
8/12 groups identified need for capacity building in political lobby activities.
More than 2/3rds of the groups expect LUPUS EUROPE to support member groups in their advocacy work and provide scene and opportunity to have more people educated and engaged in improving lupus patient interests in research and political work.
Conclusions There is a diverse range of capabilities and needs amongst national European lupus groups; some are very well established with significant capabilities, while others need capacity building in priority areas.
Acknowledgements Thank you to member groups, big and small, for all their help and support in the survey, taking the considerable time to fill in the responses and showing interest in the perspectives these findings can give.
Disclosure of Interest None declared