Patient organisations have developed a transparent and robust Code of Good Practice to guide the relations between patient organisations and the industry (including their representatives and consultants).

The initiative was started by a core group of European patient organisations who, in a year-long process of careful deliberation and in-depth consultation with their membership and a wider circle of patient groups, drafted and finally agreed the Code in June 2009.

It is very much hoped that this consensus document, bringing together the collective experience of a wide range of European patient organisations and their membership will guide other patient organisations in their relations with the healthcare industry.

The Code does not attempt to be exhaustive, but indentifies some challenges and solutions based on experience, and defines a set of basic principles and recommendations.

All patient groups are invited to adopt and sign the Code and/or to develop their own Code based along the basic principles outlined.

See the Code of Practice between patients organisations and the healthcare industry (PDF)

Patient organisations that were involved in drafting the code:

• International Alliance of Patients’ Organizations (IAPO)
• European Patients’ Forum (EPF)
• European Organisation for Rare Diseases (EURORDIS)
• European Cancer Patient Coalition (ECPC)
• International Patient Organisation for Primary Immunodeficiencies (IPOPI)
• European Federation of Neurological Associations (EFNA)
• European AIDS Treatment Group (EATG)

In addition to the above organisations, the following organisations have so far endorsed the code:

• GAT - Portugal
• RETT Syndrome
• Myeloma Euronet
• Alzheimer Europe (AE)
• International Diabetes Federation - European Region (IDF)
• Lupus Europe
• European Men's Health Forum (EMHF)
• Ovacome UK