Background Lupus patient organizations(POs) are becoming increasingly important stakeholders in political and medical healthcare decision-making processes. LUPUS EUROPE is an umbrella organization of national lupus groups in Europe.
Objectives To identify the different structures and capabilities among European lupus groups.
Methods An online survey was made for the LUPUS EUROPE then 24 member groups from 22 countries.
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
9 of the 14 groups are affiliated with the national arthritis and/or rheumatism associations
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
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.
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