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Patient Advocacy

Improving patient care is at the heart of ERN RARE-LIVER and patient involvement is integral to the management of the network. 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 is a mechanism for information exchange specifically designed to enable patients and patient organisations to interact with the work of the project.

In addition to ensuring that the patient’s voice is heard in the decision making, one of the major aims of the ERN RARE-LIVER programme is to develop patient information leaflets building on best practices 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 the ERN RARE-LIVER. As the work progresses, it is hoped that resources for additional countries and disease areas will be added.

Find a patient organisation in your country

Click here to find a patient organisation in your country.

How to join as a patient representative

If you are interested to join the European Patient Advocacy Group (ePAG) of the ERN RARE-LIVER as a patient representative, you and your patient organisation need to fulfil certain criteria. 

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Please have a look at the >> Terms of Reference << to learn more about the organisation and options to join the ePAG of ERN RARE-LIVER

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Please contact the ERN office and/ or lenja.wiehe@eurordis.org from EURODIS for more information. 
Additional information and patient discussion can be found on twitter @ERN_RARE_LIVER
There are numerous patient organisations working with ERN RARE-LIVER to provide the patient perspective when carrying out its activities. Click here to view these.

Patient Leads

José Willems

José Willemse

Adult Patient Lead

  • Patient Leads
  • Quality of Life
  • Transition
  • Autoimmune Hepatitis (AIH)
  • Acute Liver Failure

Nederlandse Leverpatienten Vereniging, Netherlands

Portrait Leburgue

Angela Leburgue

  • Patient Leads
  • Primary Biliary Cholangitis (PBC)

ALBI France

Patient Co-Leads
of Transversal Working Groups

Working Group

Patient Co-Lead

Quality of Life

José Willemse, Nederlandse Leverpatienten Vereniging, Netherlands

Transition

José Willemse, Nederlandse Leverpatienten Vereniging, Netherlands

Liver Disease in Pregnancy

Wiebke Papenthin, Morbus Wilson e.V., Germany

Patient Co-Leads
of Disease Working Groups

Working Group

Patient Co-Lead

Primary Biliary Cholangitis (PBC)

Angela Leburgue, ALBI France

Autoimmune Hepatitis (AIH)

José Willemse, Nederlandse Leverpatienten Vereniging, Netherlands

Bert Tomsin, Vlaamse PBC-PSC-AIH patiëntenvereniging, Belgium

Primary sclerosing cholangitis (PSC)

Martine Walmsley, PSC support, UK

Alpha-1 Antitrypsin Liver Disease (AATD)

Frank Willersinn, Alpha-1 Plus asbl, Belgium

Acute Liver Failure

José Willemse, Nederlandse Leverpatienten Vereniging, Netherlands

Polycystic liver disease

tbd.

Wilson Disease

Wiebke Papenthin, Morbus Wilson e.V., Germany

Vascular Liver Disease

Jean-Marie Combes, Samir Patel, AMVF France

Laure Dorey, AMFE France

Rare Liver Tumours

tbd.

Genetic Cholestatic Disease

tbd.

Biliary Atresia

tbd.

Biliary Malformations

tbd.