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For patients’ organisations, ethics and transparency are key values. However, practice is more difficult than it looks like, especially because these principles do not apply to the relationship with sponsors only.

This was the topic of the Training on Transparency and Ethics organised by the European Patients Forum from Monday 19th till Wednesday 21st attended by 12 national and European patients organisations members of the EPF. During the three days, EFA Giuseppe de Carlo could discuss how to be transparent and accountable in several areas, such as governance, membership, fundraising and communication.

The training was very inspiring and gave the chance to participants to share and discuss their experiences and good practices. For example, it was discussed the importance of specific documents, eg code of conduct, annual, and what these should include. We also had a look at other organisations website and assess the accessibility of the information.

We also discussed how frameworks for corporate partnerships can set the rules and guarantee the principle of independence and mutual respect. Moreover, a session on transparency in advocacy was organised by Transparency International.

All attendees will now work towards the implementation of improvements in their own organisation and will contribute to the development of new tools and material on transparency and ethics that will be shared with other patient groups