The European Patient Forum (EPF) published in 2017 a booklet titled “The Added Value of Patient Organizations”, which captures the crucial role of patient organizations in healthcare policy, capacity building, peer support, and research and development, as well as the challenges they face.
This booklet highlights the significant impact these organizations have on shaping health policies and supporting patients, while also acknowledging the need for better resources and more coherent support structures to enhance their full effectiveness. The emphasis is on the need for these organizations to adapt to technological and communicative advances in order to remain influential and effective in a dynamic environment is particularly notable.
Here is the link to the publication.
The European Patient Forum (EPF) is an umbrella organisation of patient organisations across Europe and across different disease-areas. Read more about the EPF at this link
Citation
“The added value of patient associations”, European Patient Forum (EPF); Authors: Dorota Sienkiewicz, Corine van Lingen; Editors: Nicola Bedlington, Camille Bullot, Kaisa Immonen; published: November 2017
