
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.
- 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.
- 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.
- Please contact the ERN office for more information.
Patient Leads
Patient Co-Leads
of Transversal Working Groups
Working Group |
Patient Co-Lead |
|
---|---|---|
Liver Disease in Pregnancy |
Wiebke Papenthin, Morbus Wilson e.V., Germany |
|
Quality of Life |
Angela Leburgue, ALBI France |
Patient Co-Leads
of Disease Working Groups
Working Group |
Patient Co-Lead |
|
---|---|---|
Primary Biliary Cholangitis (PBC) |
Angela Leburgue, ALBI France |
|
Autoimmune Hepatitis (AIH) |
Francesca Scarpa, Amaf Italy |
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 |
|
Polycystic liver disease |
tbd. |
|
Wilson Disease |
Wiebke Papenthin, Morbus Wilson e.V., Germany |
|
Vascular Liver Disease |
Laure Dorey, AMFE France |
|
Rare Liver Tumours |
tbd. |
|
Genetic Cholestatic Disease |
tbd. |
|
Biliary Atresia |
tbd. |
|
Biliary Malformations |
tbd. |