Liver Patients International (LPI) is pleased to share the new communications toolkit for COVID – 19 and liver patient organisations. The purpose of the toolkit is to inform liver patient organisations on how they can support patients during this challenging time of the pandemic:

This document has been made by José Willemse and Martine Walmsley, patient advocates, in collaboration with RPP and endorsed by ERN Rare Liver and EASL, as part of the RPP Patient Grant scheme.

Click the titles below to access the toolkit and find more information:

  1. COVID-19 Toolkit for Liver Patient Associations

This document has three sections, in order to support liver disease patients during the COVID-19 pandemic:

  • Section 1: helps patient associations to communicate accurate information about COVID-19 to patients
  • Section 2: advises on the use of social media and newsletters to make communication to patients easier
  • Section 3: gives tips about how advocacy can be used to improve the situation and treatment of liver disease patients

2. Care of Patients with Liver Disease during the COVID-19 Pandemic Lay Version final

This lay summary of the guidance in the European Association for the Study of the Liver (EASL) – the European Society of Clinical Microbiology and Infectious Diseases (ESCMID) Position Paper is intended to be read alongside local and national guidance about COVID-19.

The lay summary covers:

  • How healthcare providers are minimising COVID-19 transmission
  • What changes to expect in your care during the pandemic
  • What to expect if you get COVID-19
  • Prioritisation of patients for some tests and procedures

3. Covid-19 vaccine: Video message
Ansgar Lohse, ERN RARE-LIVER Coordinator and specialist in both Hepatology and in infectious diseases, provides a video message on the topic of vaccines against COVID-19, addressing the questions of patients with rare liver diseases, in particular for patients with immune mediated liver diseases and liver transplant patients.
Watch video here :

4. 2021-01-07: SARS-CoV2 vaccines and other vaccinations for patients with rare liver diseases.
Patients living with rare liver diseases are strongly encouraged to get vaccinated against COVID-19.This includes patients with decompensated liver disease and any rare liver disease such as PBC, PSC, AIH, vascular liver diseases, patients waiting for liver transplant and patients post-transplant.The vaccines appear safe. Talk to your healthcare provider if you are worried or unsure[…]. Even though the mRNA-technology for developing vaccines is new in human vaccines, there is a lot of background knowledge on this technology, and experience from animal vaccines has shown us that this is an elegant new technology allowing faster development and faster production of vaccines than classical vaccines. The disadvantages of these vaccines are that they need to be applied twice with a three to four week interval, and that transporting them involves special cooling requirements. The side effects of these vaccines are very similar to the transient side effects we see with most other vaccines including influenza, and comprise local reactions such as pain in the upper arm for a couple of days and in some cases, fatigue, headache, a raised body temperature, and rarely even fever can occur, lasting one to three days. Like with all vaccines, a few cases of allergic reactions have been reported, but they have been confined to patients with a strong allergic predisposition – which is something entirely different from an autoimmune disease. Nonetheless, vaccinations should be given under appropriate medical supervision, as per common practice. Unfortunately, the vaccines have not yet been tested in and thus licensed for children. Therefore, vaccination in children should be weighed up carefully with treating paediatricians on the basis of the limited evidence available. In view of the very low risk of COVID-19 infection in children, in many cases vaccination may be safely deferred […].
Read more here :

LPI encourages Liver Patient Associations to share and use this material in order to inform patients and raise awareness about COVID-19 and liver related issues.