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 interesed 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
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Angela Leburgue
ALBI France
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José Willemse
Adult Patient Lead
Nederlandse Leverpatienten Vereniging, Netherlands
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. |
|