European Patients Organisations and CIPAST

The objective of this part of the CIPAST activities was to identify the European patients based organisations (families or disabled people). Starting with the INSERM data base which describes 300 French national patients associations (in total 350 regional or other type of associations), families or disabled people based associations a survey has been carried out with the French associations about their links to European organisations. Then INSERM has investigated the links mentioned in turn by the European organisations. The institutions have been selected by two criteria: interest for research – interest for scientific and medical information on the diseases they are focused on.

The Working Team was formed by Florence Paterson, (sociologist), Françoise Reboul Salze, Inserm documentalist engineer and Dominique Donnet Kamel, in charge of the INSERM, who coordinated the European patients based organisations investigation for CIPAST.

The inquiry done on the European links of the 300 French patients associations enabled the working team to identify about 60 European Organisations. Below you can find the description of the European patient organisations’ main characteristics, missions, aims and activities.

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