The European Patients Forum (EPF) recently published “The Added Value of Patient Organizations” which contains some excellent data they’ve collected from their members and insights about the value patient organizations play as well as the challenges they face.
The report’s executive summary states:
The objective of the report is to emphasise the contribution of patient organisations in representing and voicing the situation of a specific population that would otherwise not be represented. The main activities of patient organisations are set out in four different areas: policy, capacity building and education, peer support and research & development (both health and pharmaceutical).
The full report can be read here on the EPF's website.