Patient Advocacy
Improving patient care is at the heart of ERN RARE-LIVER, and meaningful patient involvement is an integral part of the network’s governance and activities. Patient representatives are included in our governance structure, and we are committed to involving as many patient organisations and representatives as possible through our European Patient Advocacy Group (ePAG).
Ensuring that the patient voice is heard in decision-making is a key priority for ERN RARE-LIVER. Another important aim of our work is to develop high-quality patient information leaflets, drawing on best practices and expertise from across Europe.
You can find our patient information leaflets under Understand Your Diagnosis.
Our ePAG
Our European Patient Advocacy Group (ePAG) brings together patient representatives from across Europe to ensure that the patient voice is heard throughout ERN RARE-LIVER. Currently, around 15 active patient representatives from 12 European countries are involved in our ePAG.
ePAG members contribute to the work of ERN RARE-LIVER through regular meetings and participation in working groups and governance bodies. They collaborate with clinicians on webinars, patient pathways and other projects, contribute to website and patient information content, and represent the patient community at events and conferences.
Parent Advocacy
The voices of children with rare liver diseases and their parents are an important part of ERN RARE-LIVER. Parents have a unique perspective and play an important role in advocating for their children and helping to improve care, research and quality of life.
We are currently exploring additional ways to strengthen the involvement of parents and children within the network. If you are interested in becoming an ERN RARE-LIVER Parent Advocate or have any questions, please contact us at ERN.RareLiver@uke.de.
How to join
- 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 your own interests, but the interests and perspectives of the wider patient community.
- For patients: a letter of recommendation from your patient organisation.
For more information, please check the flyer below.
Meet our Patient Leads
Patient Leads in Disease Working Groups
Within the ERN RARE-LIVER Working Groups, Patient Representatives work hand in hand with experts and clinicians from the Member and Partner Centres of ERN RARE-LIVER. The following lists the respective Working Groups together with their Patient Leads.
Working Group |
Patient Co-Lead |
|---|---|
Primary Biliary Cholangitis (PBC) |
Bert Tomsin (Mijnlever Patiëntenvereniging Zeldzame Leverziekten) |
Autoimmune Hepatitis (AIH) |
Jeanina Nieuwdorp (NLV (Dutch Liver Patient Association), Bert Tomsin (Vlaamse PBC&PSC-patiënten Vereniging) |
Primary Sclerosing Cholangitis (PSC) |
Antonija Šimunković (Croation Rare Liver Foundation); Martine Brown (PSC Support UK) |
Alpha-1 Antitrypsin Liver Disease (AATD) |
Frank Willersinn (Alpha-1 Plus Belgium) |
Polycystic Liver Disease (PLD) |
Carmen Teemer (PKD – Familiäre Zystennieren) |
Wilson Disease |
Wiebke Papenthin (Morbus Wilson e.V.) |
Vascular Liver Disease (VLD) |
Sophie Pénisson (AMVF France) |
Patient Leads in Transversal Working Groups
Working Group |
Patient Co-Lead |
|---|---|
Liver Disease in Pregnancy |
Wiebke Papenthin (Morbus Wilson e.V., Germany) |