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 European Patient Advocacy Group (ePAG).
In addition to ensuring that the patient voice is heard in decision making, one of the main aims of the ERN RARE-LIVER programme is to develop patient information leaflets based on best practice across Europe. Please take a look at our patient information leaflets under each diagnosis here.
Parent Advocacy
Within ERN RARE-LIVER, it is essential to also include the voice of the children with rare liver diseases and the voice of their parents. Parent advocacy plays a decisive role in supporting children with rare liver diseases within ERN RARE-LIVER. Parents are often the most important advocates for their children and work for better diagnoses, access to specialised treatment and targeted research. With their experience and commitment, they actively contribute to the development of new strategies to improve the quality of life of children with rare liver diseases.
If you are interested in becoming an ERN RARE-LIVER Parent Advocate or if you have any questions, please contact us directly via email.
How to join as a patient/parent representative
- Basic proficiency in English (the working language of the ERN RARE-LIVER network).
- Availability to participate in regular online meetings and project activities.
- Willingness to represent not only one’s own interests, but the interests of all those affected
- For patients: a letter of recommendation from your patient association
For more information, please check the flyer below.
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 |