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European Liver Patients' Association

Acronym: ELPA

General Information

Identification Code: 89292219623-93
Website: [object Object]
Entity Form: NON FOR PROFIT ASSOCIATION - organisation of liver diseases patients
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 9/13/2012
Last Update: 11/27/2023
EP Accredited Number: 5

Mission & Interests

Goals: ELPA’s aim is 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 as compared to other areas of medicine such as heart disease; to share experience of successful initiatives; to work with professional bodies such as EASL and with the EU to ensure that treatment and care are harmonised across Europe to the highest standards. Our Mandate:ELPA emerged from a desire amongst European liver patient groups to share their experiences of the often very different approaches adopted in different countries. In June 2004, 13 patient groups from 10 European and Mediterranean Basin countries met to create the association. ELPA was formally launched in Paris on April 14th 2005 during the annual conference of the European Association for the Study of the Liver (EASL) and now has 32 members from 25 countries. Our ultimate goal is a world without liver diseases.
Interests Represented: Promotes their own interests or the collective interests of their members
Interests:
  • Budget
  • Communication
  • Consumers
  • Education and training
  • Employment and social affairs
  • Food safety
  • Humanitarian aid and civil protection
  • International co-operation and development
  • Justice and fundamental rights
  • Public health
  • Regional policy
  • Research and innovation
  • Sport
  • Taxation
  • Youth
Levels of Interest:
  • european

Activities

Main EU Legislative Proposals: All aspects related to health, cancer, health statistics, research, development for health, cross-border healthcare, access to healthcare, new digital aspects of health, data privacy issues, clinical and pharmaceutical development.
Communication Activities: White paper on patient' perspective, high-level events in EP and Commission, good practices, conferences. Additionally, we are a part of 18 EU Medical research projects Horizon2020 and 1 project from the EITHealth platform and we are part of three additional projects which are now in an approval stage. We are constantly collaborating with »Friends of Liver » MEP group and have just started collaborating with European Kidney Patients' Federation who are collaborating with MEP group »Kidney Health«.
Inter-institutional or Unofficial Groupings: Cancer

Head Office

Address: Bastion Tower levels 11 & 12 Place du Champ de Mars, 1050 Brussels Begium
Post Code: 1050
City: Brussels
Country: BELGIUM
Phone: [object Object]

EU Office

Address: Bastion Tower levels 11 & 12 Place du Champ de Mars, 1050 Brussels Begium
Post Code: 1050
City: Brussels
Country: BELGIUM
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: EU grants were received because we are Consortium Partners in 18 EU Projects.

Membership Information

Members10 Percent: 0
Members25 Percent: 1
Members50 Percent: 2
Members75 Percent: 2
Members: 10
Members F T E: 7.75

Structure

Structure Type: Structure
Is Member Of: 1. VHC - Vlaams Hepatitis Contactpunt, 2. The Chronic Viral Hepatitis Patients Association, "B18", 3. Leverforeningen, 4. CAHIV, 5. Cyprus Liver Patients Association, 6. Association of Liver Patients' Care - ALPC, 7. The Finnish Kidney and Liver Association, 8. Fédération SOS hépatites, 9. Association for health education, prevention and better treatment – HEPTA, 10. Hepar Centar – Bitola, 11. Hungarian Association of Chronic Hepatitis Patients - VIMOR 12. Hetz - Israeli Association For The Health Of The Liver, 13. Star of Hope Foundation, 14. SOS Hépatites Portugal, 15. APAH-RO, 16. Liver patients association HRONOS, 17. HEP HELP KLUB, 18. Sanca pre pecen, 19. Slovenian Association of patients suffering from hepatitis SLOVENIA HEP, 20. Catalan Association of Hepatitis Patients - ASSCAT, 21. National Federation of Liver Patients and Transplanted-FNETH, 22. Riksföreningen Hepatit C - RHC, 23. HEPYAŞAM - Living with Hepatitis Association 24. British Liver Trust, 25. Liver4Life, 26. proLAR Nett, 27. United against Hepatitis, 28. Humanitarian action, 29. HepCPositive, 30. Hepatitis C Cured Patient Association, 31. Hepatitis C Partnership. 32. Spanish Patient Organization Lysosomal Acid Lipase Deficiency (AELALD)
Organisation Members: EMA PCWP https://www.ema.europa.eu/en/partners-networks/patients-consumers/eligible-patients-consumers-organisations EMA PRAC https://www.ema.europa.eu/en/committees/pharmacovigilance-risk-assessment-committee-prac EASL Policy & Public Health Committee https://easl.eu/easl/leadership-and-governance/policy-public-health-advocacy-committee/#:~:text=The%20mission%20of%20the%20Policy,public%20affairs%20goals%20and%20objectives. ECDC Advisory Forum https://www.ecdc.europa.eu/en/about-ecdc/who-we-are/governance/advisory-forum/observers ECDC working group on monitoring hepatitis B and C in the EU https://www.ecdc.europa.eu/sites/default/files/documents/hepatitis-B-C-monitoring-responses-hepatitis-B-C-epidemics-EU-EEA-Member-States-2019.pdf WHO EURO Collaborating Committee on TB, HIV, and viral hepatitis https://www.who.int/europe/groups/regional-collaborating-committee-on-accelerated-response-to-tuberculosis-hiv-and-viral-hepatitis-(rcc-thv)/about HERA Civil Society Forum https://health.ec.europa.eu/health-emergency-preparedness-and-response-hera/advisory-forum_en#civil-society-forum