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COVID-19 Patient Organisation Toolkit

Communications and Advocacy Toolkit

For Liver Patient Organisations


Patient Organisation Toolkit

Coronavirus continues to impact everyone in the liver patient community, from understanding our individual health risks, acting to minimise the risk of becoming infected, to dealing with delays in routine or urgent liver care.

As a patient organisation, PSC Support has been challenged by needing to communicate complex COVID-19 information quickly to patients and providing support on one hand, and advocating to minimise interruptions to healthcare on the other.

We're not the only ones; other tiny rare liver disease organisations across Europe, with little manpower or resource, face the same challenges.

That’s why José and I created a COVID-19 Toolkit in collaboration with patient groups, advisory groups and ERN RARE-LIVER and EASL Board members for patient organisations. We wanted to reduce their burden by giving patient organisations some simple communication and advocacy tips, and an understandable summary of the latest expert thinking on caring for liver patients during COVID-19 (the ESCMID-EASL Position Paper).

Patient Association COVID-19 Toolkit f

It is important to us that the ESCMID-EASL Position Paper is accessible not only to clinicians but to patients and patient organisations. By writing the lay summary, we hope that patients will better understand the challenges faced by liver services to provide care and steps they are taking to prioritise the most urgent cases and why.

But that's not to say delays in routine monitoring and care are acceptable. They are not, and when I say 'advocating to minimise interruptions to care', I mean working with clinicians to ensure services meet patients’ needs, and to advocate for these services to be properly resourced in order to deliver the right care to patients, when they need it. Our Toolkit includes constructive, realistic advocacy tips to help achieve this.

This Toolkit will support rare liver patient organisations to communicate and advocate as effectively as possible for the benefit of their patient communities.


Martine Walmsley

PSC Support Chair of Trustees

Creating the Toolkit was possible thanks to support from EASL, ERN RARE-LIVER and RPP Group, who provided a non-financial grant for its development. 

Martine Walmsley and José Willemse are members of the Management Board of the ERN RARE LIVER. Martine is the patient representative for the EASL Policy and Public Health Committee.