Patient organisations have evolved considerably in the last 80 years. The first patient organisations were about the sharing of patients’ experiences of a specific disease. These evolved into mutual self-help organisations in the 1940s and 50s. In the 1960s organisations took on the task of defending stigmatised and excluded patients. While health reform and health advocacy can be traced to the social reform movements of the 19th century, modern patient advocacy (distinguished from health advocacy by the direct participation of patients) has its origins in the HIV/AIDS activism in the 1980s, as well as breast cancer advocacy in the 1990s.
During the 1980s a number of organisations operating within the same disease-area merged to become national bodies with a stronger voice and greater political recognition. In the 1990s national groups started to come together on a pan-European basis. This was, to some extent, in response to the increasing influence of the European agenda on national healthcare and pharmaceutical policies as more countries joined the European Union (EU).
In 1992 the Maastricht Treaty introduced an explicit EU competence on health by “encouraging cooperation between Member States” and “if necessary, lending support to their actions” in the field of public health (article 129(1)). When the EU's mandate for health was revised in the Amsterdam Treaty of 1997, the EU was mandated to ensure “a high level of human health protection” in the “definition and implementation of all [Union] policies and activities” and to work with Member States to improve public health, prevent illness and “obviate sources of danger to human health” (Article 168).
Following this development, in 2003 a number of pan-European patient groups realised that the next step in their evolution was to bring together groups from different disease-areas and established the European Patients’ Forum (EPF). EPF is now an umbrella organisation of 72 pan-European disease-specific patient organisations and national coalitions of patient groups from many EU Member States. EPF’s role is to be the united voice of patients and the key interlocutor with the EU institutions on cross-cutting issues affecting all patients.
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