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Spearheading collaboration between EASL and patient organisations to fight liver disease together
Our collaborations
Goals
At EASL, we are boosting partnerships with umbrella patient organisations engaged in liver diseases. Our joint goals include increasingly to:
- take into account the patient experience
- consult on patient views on quality of life
- better understand what patients need from healthcare professionals
- promote the prevention of liver conditions
Building new synergies
EASL is building new opportunities to engage with umbrella patient organisations, aiming to:
- share best practices
- inspire joint initiatives and activities
- coordinate and convey relevant messages
Member organisations
EASL is pleased to announce collaborations with these organisations:
Calling for umbrella patient associations to partner with EASL
We are keen to join forces with umbrella organisations that are Europe-based and representing people affected by issues related to the liver. We want to share expertise with patient organisations that are patient-focused, patient-driven, established, and transparent.
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Please contact EASL’s Advocacy, Policy and Public Health Coordinator, Morgane Guex, to find out how we can partner with you. |
Potential benefits to patient organisations
- participating in the Patient Forum at EASL Congress
- one EASL Congress registration, at no cost
- relationships with leading EU hepatology associations
- accessing leadership of member societies
- requesting EASL endorsement
- sharing relevant resources via the EASL website and news channels, including during the flagship congress
EASL Patient Forums
Every year, EASL holds a Patient Forum to allow patient organisations’ representatives and healthcare specialists to meet and exchange their views and experiences on various topics, such as stigma around liver diseases and health literacy.
On 5 June 2024, as part of the EASL Congress 2024 in Milan, Italy, the EASL hosted the Patient & Advocate Forum focused on Patient Experiences in Clinical Settings. The forum featured discussions on improving patient experiences, highlighting challenges and initiatives from the AISF perspective. Topics included strengthening community-based HCV services, people-centred harm reduction strategies, and the essential integration of liver disease in multidisciplinary care for patients with hemoglobinopathies. The forum also addressed patient experiences in accessing health services, unmet patient needs, and the necessary changes in the doctor’s office to better meet these needs.
On 21 June 2023, as part of the EASL Congress 2023 in Vienna, Austria, EASL hosted the Patient & Advocate Forum focused on Lived Experiences – Challenges on the Ground & Patient Perspectives. The forum included updates from Liver Patient International, Global Liver Institute, the Thalassaemia International Federation, and the World Hepatitis Alliance. It also featured community-led recommendations from the ERN Rare-Liver network on how to improve the care of patients with rare liver diseases.
On 24 June 2022, and as part of the International Liver CongressTM (ILC) in London, the European Association for the Study of the Liver (EASL) held its annual Patient Forum on the topic: barriers to liver disease care: exploring the impact of stigma and discrimination. Patient advocates delivered inspiring and, sometimes, harrowing testimonies of their experience as people living with liver diseases. They exchanged their views on the different facets of stigma and its impact on patients.
Discover the event’s pictures, watch it on demand, and download the report.
On 22 November 2021, EASL held its annual Patient Forum on the topic: health literacy to empower patients and address inequities. We collaborated with five members of our Patient Synergies network to bring together the expertise of patient advocates and healthcare specialists and hold an engaging discussion around the status of health literacy, with a special focus on literacy related to liver health.
Read more about the event, watch it on reply, and download the report
On 4 November 2020, EASL held its first online Patient Forum, a vibrant exchange exploring synergies between our association of professionals and regional patient organisations engaged in the fight against liver disease.
Scientists, practitioners, and patient advocates discussed two EASL Policy Statements released at Digital ILC 2020, one addressing the coexistence of alcoholic fatty liver disease and alcohol-related liver disease; the other on drug use and the global hepatitis C elimination goal. A dynamic, constructive debate took place on combining the forces of evidence-based EASL Policy Statements and the power of patient advocacy, to mobilise for positive change in public health.
Read more here. Watch the recordings of the EASL Policy Statement on the coexistence of NAFLD and ARLD and the EASL Policy Statement on Drug Use and the Global Hepatitis C Elimination Goal.
Useful resources for patients organisations and patients
View resources of relevance to patient organisations: lay summaries, toolkits, webinars, Clinical Practice Guidelines, Policy Statements, videos, and more.
EASL Policy Statements
Browse numerous EASL Policy Statements, in full versions and lay versions.
Lay summaries
Journal of Hepatology lay summaries
- Browse the lay summary archives
JHEP Reports lay summaries
- Lay summary on fighting fatty liver disease
On 12 April 2022, EASL announced the recent publication of its first ever, accessible lay summary, a 20-page publication intended for the general public, people at risk of – or already living with – non-acohol related fatty liver disease (NAFLD). It complements a comprehensive patient guideline already published in EASL’s open-access journal, JHEP Reports, thus providing the public with different resources to match differing health literacy levels.
Read about the lay summary and access related resources
- Browse the lay summary archives
EASL Campus resources
Create your free account on EASL Campus to access patient-focused resources, including:
- EASL and ESCMID Position Paper, lay version: Care of patients with liver disease during the COVID-19 pandemic
- Ask EASL: Patient-oriented webcast on COVID-19 and the liver
COVID-19 resources
- EASL policy statement on the use of COVID-19 vaccines in people with chronic liver disease, hepatobiliary cancer, and liver transplant recipients
- Lay summary 1: Care of patients with liver disease during the COVID-19 pandemic
- Lay summary 2: Impact of COVID-19 on the care of patients with liver disease: EASL-ESCMID Position Paper after 6 months of the pandemic.
- COVID-19 toolkit for liver patient associations
Podcasts
In this episode, Prof. Markus Cornberg is joined by Dr Christiane Eberhardt and Prof. Daniel Shouval, to answer a range of questions raised by EASL’s Patient Synergies regarding the recently approved COVID-19 vaccinations. They address topics including the reasons for the rapid development of the vaccines, whether immunocompromised liver transplant patients should receive the vaccine, real-world data from vaccination programmes worldwide, and the potential duration of immunity. Listen here.
On the occasion of Liver Cancer Awareness month 2020, we held an interview with Dr Massimo A. Iavarone, hepatologist at the Ospedale Maggiore in Milan, Italy. We are putting questions from patient organisations to a specialist, who answers them clearly and accessibly.
Dr Iavarone answers key questions raised by two EASL-affiliated patient associations, then both part of our EASL Patient Synergies collaboration: PSC Support, the leading organisation for anyone affected by primary sclerosing cholangitis, and Liver Patients International (LPI). Listen here.
Videos and infographics
Eliminating hepatitis C
Reducing the burden of alcohol-related liver disease (ARLD)
About obesity and non-alcohol related fatty liver disease (NAFLD)
A Right to Know: Alcohol Labelling Across Europe
User-friendly infographic on liver cancer
Past activities
EASL Patient Synergies Roundtable on Liver Cancer
On 4 February 2021, a day before the start of our Digital Liver Cancer Summit, we held our EASL Patient Synergies Roundtable on Liver Cancer. It was organised by EASL and our EASL-affiliated patient associations. A full range of the community attended the open interaction: liver patients from all liver disease areas including rare diseases, representatives from national liver associations, and experts. The Roundtable Discussion was organised around three topics identified by the EASL-affiliated patient associations. Watch recordings of the three key presentations here.
EASL’s Love Your Liver Patient Art Competition
Thank you to all the wonderful artists who joined the contest Love Your Liver and shared their great artworks with EASL! Studies show that creative activities can help people living with cancer, stress, and other disorders, such as depression. Keep up the good work!
Art is a wound turned into light – Georges Braque