Improving patient care is at the heart of ERN RARE LIVER and patient involvement in the management of the Network is integral. We have patient representation within our governance structure and we aim to involve as many patient organisations and representatives as possible in our Patients’ Forum. The Patients' Forum as a mechanism for information exchange specifically designed to enable patients and patient organisation interact with the work of the project.

In addition to ensuring the patient voice is heard in the decision making of the Network, one of the major aims of the ERN RARE-LIVER programme is to develop a resource of patient information leaflets building on best practice across Europe. The content, style and language will be targeted to the specific needs of patients within the countries covered by the clinical centres within ERN RARE-LIVER. As the work progresses it is hoped that resources for additional countries and disease areas will be added.

To find out more information about patient involvement, contact our patient lead:

  • Alison Taylor (Paediatric): This email address is being protected from spambots. You need JavaScript enabled to view it.

 Additional information and patient discussion can be found on twitter @ERN_RARE_LIVER

There are 32 patient organisations working with ERN RARE LIVER to provide the patient perspective within the networks activities. Click here to view these.

Patient related information is available from a number of Patient Organisations (please click here)