The European Liver Patients' Association (ELPA)
Summary and objectives
ELPA has brought together people, knowledge, and expertise from 31 member associations in 25 different countries for 16 years.
ELPA aims to promote the interests of people with liver disease and, in particular: to highlight the size of the problem; to promote awareness and prevention; to address the low profile of liver disease; to share the experience of successful initiatives; to work with professional bodies to ensure that treatment and care are harmonized across Europe to the highest standards. ELPA's vision is that all liver patients are diagnosed in time, are treated with respect, and have equal access to the best standard of medical care – regardless of origin, lifestyle, and type of liver disease.
As an umbrella patients' association, ELPA acts as an intermediary between all the involved stakeholders - the national patients' communities, the industry, and the EU policymakers. It provides a crucial perspective based on the fact that ELPA, through its members, has immediate and direct access to the patients' lives and the best practices in a national and regional context. As one voice, ELPA works to promote the development and implementation of policies, strategies, and healthcare services that empower patients to be involved in decision-making.
However, ELPA was established by patients, is governed by patients, and represents patients. So, ELPA puts a lot of effort into organizing training, such as the ELPA Educational Training, promoting capacity building, and stimulating networking.
Also, ELPA strives to enhance patients' capability to play an active role in all aspects of their treatment and care. To improve patient centricity, ELPA created 8 Working Groups dedicated to various liver diseases. Besides, ELPA is currently involved in 9 ongoing medical research projects. 8 are funded by the European Commission through the Horizon 2020 program, 1 by the European Institute of Innovation and Technology (EIT).
As ELPA deals with many medical and scientific contents, a Scientific Committee formed by Medical Doctors and researchers was appointed.
Activities on Hepatitis
Europe's Beating Cancer Plan, a contribution from ELPA
On February 3, 2021, on the eve of World Cancer Day, the European Commission officially presented the Europe's Beating Cancer Plan – the main priority in the area of Health and a vital pillar of a solid European Health Union.
ELPA's position regarding the Plan is among the official feedbacks.
ELPA submitted suggestions revolving around reducing and eliminating hepatitis B and C to reduce liver cancer incidence in Europe. ELPA believes that it is possible to reduce hepatitis B and eliminate hepatitis C to reduce liver cancer by 60 - 70% in Europe as a public health threat by 2030.
This is why ELPA proposed to include in the EU Cancer Plan the #EndHep Europe Initiative. ELPA also wants to join different forces such as patients' organisations, EU institutions, medical institutions, WHO Europe, representatives of Health of the member's states, experts, and researchers, which will lead to the elimination of hepatitis in Europe before/in 10 years.
Reference to hepatitis B and C reduction and elimination is in the chapter on preventing cancer caused by infections.
ELPA will continue the dialogue with the EU Commission to make hepatitis elimination a reality.
"The Hep-CORE Report – Monitoring the implementation of hepatitis B and C policy recommendations in Europe"
In 2016 ELPA launched the report, a unique patient-led monitoring tool that engaged patient organizations in providing a complete picture of the level of implementation of viral hepatitis B and C policy recommendations in 25 European Mediterranean Basin countries.
ELPA Working Group on Hepatitis B elimination
Knowledge and awareness about Hepatitis B (HBV) have always been at the core of the association and a priority for its members. ELPA has been working on Hepatitis elimination since its creation. However, this Working Group, formally established in 2019, has been collecting updated and relevant information to push forward Hepatitis B elimination and achieve this goal in collaboration with other Working Groups. This particular Group aims to provide tools for chronic HBV patients to live their lives as safely as possible.