European Liver Patients' Association

Last updated
European Liver Patients' Association
AbbreviationELPA
Formation2004
TypeNon-Governmental Organisation (NGO)
HeadquartersSchuman Roundabout 2-4, Level 6,1040 Brussels, Belgium
Region
Europe
Official language
English
Website https://elpa.eu/

The European Liver Patients' Association (ELPA) is an international non-governmental organisation best known for its role in patient advocacy concerning liver diseases. ELPA is an umbrella organisation representing more than 30 members stemming from 25 European and non-European countries. [1]

Contents

History

ELPA was created in June 2004, when 13 liver patient groups from 10 European and Mediterranean countries met to create the association. ELPA was formally launched in Paris on 14 April 2005 during the annual conference of the European Association for the Study of the Liver (EASL). [2]

Nowadays, ELPA represents more than 30 liver patients' organisations from 25 different countries (Belgium, Bosnia and Herzegovina, Cyprus, Croatia, Denmark, Egypt, Finland, France, Georgia, Ireland, Israel, North Macedonia, Norway, Poland, Portugal, Romania, Russia, Serbia, Slovakia, Slovenia, Spain, Sweden, Turkey, United Kingdom). [3]

Objectives

ELPA aims to promote the interests of people with liver disease and, in particular:

Structure

ELPA vision and activities are coordinated and supervised by an elected president, and a Governing Board made up of Directors who belong to an organisation that is a full member of the association.

One of the Directors is also the Treasurer of the Association. As ELPA deals with many medical and scientific contents, a Scientific Committee formed by Medical Doctors and researchers has been appointed. The Secretariat in Brussels runs all day-by-day activities in the heart of the EU capital.

ELPA is an official Non-Profit Organisation with international goals based in Brussels, governed by Belgian law for NonProfit Organisation (ASBL). Official roles and procedures of the association were published on the Moniteur Belge in 2005. [4]

To better communicate with its supporters and stakeholders, ELPA has obtained the ISO 9001:2015 quality standard in 2021, making it the first patients' association in Europe with a quality management system [5]

ELPA is a member of the European Patient Forum since 2011. [6]

Activities

Policy and Advocacy

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 different 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. [6]

As one voice, ELPA works to promote the development and implementation of policies, strategies, and healthcare services that empower patients to engage in decision-making. To this end, ELPA is part of different international organisations.

List of ELPA memberships
OrganisationBody of Membership
Directorate General of Health of Portugal Advisor for the National Program on Viral Hepatitis
European Association for the Study of the Liver (EASL)Policy and Public Health Committee [7]
European Centre for Disease Prevention and Control (ECDC) Advisory Forum [8]
Hepatitis B and C Network [9]
European Medicines Agency (EMA) Patient and consumer Working Party [10] Pharmacovigilance Risk Assessment Committee [11]
Viral Hepatitis Prevention Board (VHPB)Expert Board [12]
World Health Organisation (WHO) Expert Group on HIV, TB, and Hepatitis [13]
European Commission European Health Emergency Preparedness and Response Authority

Participation in Medical Research Projects

ELPA is currently involved in 10 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).

Name of ProjectComplete Name of ProjectTopicCoordinatorInvolved Countries
A-Tango [14] Novel Treatment of Acute on Chronic Liver Failure Using Synergistis Action of G-CSF and TAK-242 [15] New interventions for Non-Communicable Diseases [16] European Foundation for the Study of Chronic Liver Failure (EF-Clif)Belgium, France, Germany, Ireland, Netherlands, Spain, Switzerland, United Kingdom
Cobalt [17] COvid-19 vaccination and Biomarkers in cirrhosis And post-Liver TransplantationEuropean Foundation for the Study of Chronic Liver Failure (EF-Clif) [18]
Decision [19] Decompensated Cirrhosis: Identification of New Combinatorial Therapies based on Systems Approaches [20] Systems approaches for the discovery of combinatorial therapies for complex disorders [21] European Foundation for the Study of Chronic Liver Failure (EF-Clif)Belgium, Denmark, France, Germany, Italy, Netherlands, Spain, Sweden, Switzerland, United Kingdom
Escalon [22] European-Latin American network for the assessment of biomarkers to predict and diagnose hepatobiliary malignancies and characterization of risk factors for cancer development [23] Translational collaborative cancer research between Europe and the Community of Latin American and Caribbean States (CELAC) [24] Erasmus Universitair Medisch Centrum Rotterdam [25] Argentina, Belgium, Brazil, Canada, Chile, Colombia, Ecuador, Germany, Netherlands, Peru, Spain, United Kingdom
FiSPlat [26] FibroScan Screening Platform [27] Product and Service Development [28] Genesis-BiomedBelgium, France, Netherlands, Spain, United States
Galaxy [29] Gut-and-liver axis in alcoholic liver fibrosis [30] Understanding disease: systems medicine [31] Syddansk Universitet Belgium, Denmark, Germany, Greece, Netherlands, Norway
IP-Cure-B [32] Immune Profiling to guide host-directed interventions to cure HBV infections [33] Stratified host-directed approaches to improve prevention, treatment and/or cure of infectious diseases [21] Institut National de la Sante et de la Recherche Medicale (INSERM) Belgium, France, Germany, Greece, Italy, Spain, Sweden, Switzerland, United States
LiverHope [34] Simvastatin and Rifaximin as new therapy for patients with decompensated cirrhosis [35] New therapies for chronic diseases [36] Consorci Institut D'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS)Belgium, France, Germany, Italy, Netherlands, Spain, Switzerland, United Kingdom
LiverScreen [37] Screening for liver fibrosis - population-based study across European countries [38] Towards risk-based screening strategies for non-communicable diseases [39] Fundació Clínic per a la Recerca BiomèdicaBelgium, Croatia, Denmark, France, Germany, Italy, Netherlands, Spain, Switzerland
MicroB-Predict [2] MICROBiome-based biomarkers to PREDICT decompensation of liver cirrhosis and treatment response [40] Exploiting research outcomes and application potential of the human microbiome for personalised prediction, prevention and treatment of disease [41] European Foundation for the Study of Chronic Liver Failure (EF-Clif)Belgium, Denmark, France, Germany, Hungary, Netherlands, Norway, Spain, Switzerland, United Kingdom

ELPA Main Outcomes

Related Research Articles

<span class="mw-page-title-main">Hepatitis</span> Inflammation of the liver

Hepatitis is inflammation of the liver tissue. Some people or animals with hepatitis have no symptoms, whereas others develop yellow discoloration of the skin and whites of the eyes (jaundice), poor appetite, vomiting, tiredness, abdominal pain, and diarrhea. Hepatitis is acute if it resolves within six months, and chronic if it lasts longer than six months. Acute hepatitis can resolve on its own, progress to chronic hepatitis, or (rarely) result in acute liver failure. Chronic hepatitis may progress to scarring of the liver (cirrhosis), liver failure, and liver cancer.

<span class="mw-page-title-main">Hepatocellular carcinoma</span> Medical condition

Hepatocellular carcinoma (HCC) is the most common type of primary liver cancer in adults and is currently the most common cause of death in people with cirrhosis. HCC is the third leading cause of cancer-related deaths worldwide.

<span class="mw-page-title-main">Alcoholic liver disease</span> Medical condition

Alcoholic liver disease (ALD), also called alcohol-related liver disease (ARLD), is a term that encompasses the liver manifestations of alcohol overconsumption, including fatty liver, alcoholic hepatitis, and chronic hepatitis with liver fibrosis or cirrhosis.

<span class="mw-page-title-main">Viral hepatitis</span> Liver inflammation from a viral infection

Viral hepatitis is liver inflammation due to a viral infection. It may present in acute form as a recent infection with relatively rapid onset, or in chronic form, typically progressing from a long-lasting asymptomatic condition up to a decompensated hepatic disease and hepatocellular carcinoma (HCC).

<span class="mw-page-title-main">Alcoholic hepatitis</span> Medical condition

Alcoholic hepatitis is hepatitis due to excessive intake of alcohol. Patients typically have a history of at least 10 years of heavy alcohol intake, typically 8-10 drinks per day. It is usually found in association with fatty liver, an early stage of alcoholic liver disease, and may contribute to the progression of fibrosis, leading to cirrhosis. Symptoms may present acutely after a large amount of alcoholic intake in a short time period, or after years of excess alcohol intake. Signs and symptoms of alcoholic hepatitis include jaundice, ascites, fatigue and hepatic encephalopathy. Mild cases are self-limiting, but severe cases have a high risk of death. Severe cases may be treated with glucocorticoids. The condition often comes on suddenly and may progress in severity very rapidly.

<span class="mw-page-title-main">Autoimmune hepatitis</span> Chronic, autoimmune disease of the liver

Autoimmune hepatitis, formerly known as lupoid hepatitis, plasma cell hepatitis, or autoimmune chronic active hepatitis, is a chronic, autoimmune disease of the liver that occurs when the body's immune system attacks liver cells, causing the liver to be inflamed. Common initial symptoms may include fatigue, nausea, muscle aches, or weight loss or signs of acute liver inflammation including fever, jaundice, and right upper quadrant abdominal pain. Individuals with autoimmune hepatitis often have no initial symptoms and the disease may be detected by abnormal liver function tests and increased protein levels during routine bloodwork or the observation of an abnormal-looking liver during abdominal surgery.

<span class="mw-page-title-main">Portal hypertension</span> Abnormally increased portal venous pressure

Portal hypertension is abnormally increased portal venous pressure – blood pressure in the portal vein and its branches, that drain from most of the intestine to the liver. Portal hypertension is defined as a hepatic venous pressure gradient greater than 5 mmHg. Cirrhosis is the most common cause of portal hypertension; other, less frequent causes are therefore grouped as non-cirrhotic portal hypertension. When it becomes severe enough to cause symptoms or complications, treatment may be given to decrease portal hypertension itself or to manage its complications.

<span class="mw-page-title-main">Primary sclerosing cholangitis</span> Medical condition

Primary sclerosing cholangitis (PSC) is a long-term progressive disease of the liver and gallbladder characterized by inflammation and scarring of the bile ducts, which normally allow bile to drain from the gallbladder. Affected individuals may have no symptoms or may experience signs and symptoms of liver disease, such as yellow discoloration of the skin and eyes, itching, and abdominal pain.

<span class="mw-page-title-main">Fatty liver disease</span> Medical condition related to obesity

Steatotic liver disease (SLD) a.k.a. fatty liver disease (FLD) or hepatic steatosis, is a condition where excess fat builds up in the liver. Often there are no or few symptoms. Occasionally there may be tiredness or pain in the upper right side of the abdomen. Complications may include cirrhosis, liver cancer, and esophageal varices.

<span class="mw-page-title-main">Hepatic encephalopathy</span> Brain disease resulting from liver failure

Hepatic encephalopathy (HE) is an altered level of consciousness as a result of liver failure. Its onset may be gradual or sudden. Other symptoms may include movement problems, changes in mood, or changes in personality. In the advanced stages it can result in a coma.

<span class="mw-page-title-main">Acute liver failure</span> Medical condition

Acute liver failure is the appearance of severe complications rapidly after the first signs of liver disease, and indicates that the liver has sustained severe damage. The complications are hepatic encephalopathy and impaired protein synthesis. The 1993 classification defines hyperacute as within 1 week, acute as 8–28 days, and subacute as 4–12 weeks; both the speed with which the disease develops and the underlying cause strongly affect outcomes.

<span class="mw-page-title-main">Hepatomegaly</span> Medical condition

Hepatomegaly is enlargement of the liver. It is a non-specific medical sign, having many causes, which can broadly be broken down into infection, hepatic tumours, and metabolic disorder. Often, hepatomegaly presents as an abdominal mass. Depending on the cause, it may sometimes present along with jaundice.

<span class="mw-page-title-main">Liver biopsy</span>

Liver biopsy is the biopsy from the liver. It is a medical test that is done to aid diagnosis of liver disease, to assess the severity of known liver disease, and to monitor the progress of treatment.

<span class="mw-page-title-main">Rifaximin</span> Antibiotic medication

Rifaximin, is a non-absorbable, broad spectrum antibiotic mainly used to treat travelers' diarrhea. It is based on the rifamycin antibiotics family. Since its approval in Italy in 1987, it has been licensed in over more than 30 countries for the treatment of a variety of gastrointestinal diseases like irritable bowel syndrome, and hepatic encephalopathy. It acts by inhibiting RNA synthesis in susceptible bacteria by binding to the RNA polymerase enzyme. This binding blocks translocation, which stops transcription. It is marketed under the brand name Xifaxan by Salix Pharmaceuticals.

<span class="mw-page-title-main">Non-alcoholic fatty liver disease</span> Excessive fat buildup in the liver not caused by alcohol use

Non-alcoholic fatty liver disease (NAFLD) is excessive fat build-up in the liver without another clear cause such as alcohol use. There are two types; non-alcoholic fatty liver (NAFL) and non-alcoholic steatohepatitis (NASH), with the latter indicating the presence of further liver inflammation. NAFL is less dangerous than NASH and usually does not progress towards it, but this progression may eventually lead to complications such as cirrhosis, liver cancer, liver failure, or cardiovascular disease.

The King's College Criteria or the King's College Hospital criteria were devised in 1989 to determine if there were any early indices of poor prognosis in patients with acute liver failure. Acute liver failure is defined as the onset of encephalopathy or coagulopathy within 26 weeks of a patient diagnosed with liver disease. Patients with hepatitis B acquired at birth, Wilson's disease and autoimmune hepatitis are included if their disease was identified within the past 26 weeks. These patients are very ill, and have a very high risk of dying of their illness without adequate treatment which may include liver transplantation. It is important that physicians find ways of identifying patients with acute liver failure early in their course who will do poorly, and may require liver transplantation. The King's College Criteria have consistently shown excellent operating characteristics for determining prognosis in these patients. As liver transplantation becomes a more accessible option for patients with acute liver failure, the King's College Criteria serve a role in determining which patients may require transplantation.

<span class="mw-page-title-main">Liver failure</span> Inability of the liver to perform its normal functions

Liver failure is the inability of the liver to perform its normal synthetic and metabolic functions as part of normal physiology. Two forms are recognised, acute and chronic (cirrhosis). Recently, a third form of liver failure known as acute-on-chronic liver failure (ACLF) is increasingly being recognized.

<span class="mw-page-title-main">Cirrhosis</span> Chronic disease of the liver, characterized by fibrosis

Cirrhosis, also known as liver cirrhosis or hepatic cirrhosis, and end-stage liver disease, is the impaired liver function caused by the formation of scar tissue known as fibrosis due to damage caused by liver disease. Damage to the liver leads to repair of liver tissue and subsequent formation of scar tissue. Over time, scar tissue can replace normal functioning tissue, leading to the impaired liver function of cirrhosis. The disease typically develops slowly over months or years. Early symptoms may include tiredness, weakness, loss of appetite, unexplained weight loss, nausea and vomiting, and discomfort in the right upper quadrant of the abdomen. As the disease worsens, symptoms may include itchiness, swelling in the lower legs, fluid build-up in the abdomen, jaundice, bruising easily, and the development of spider-like blood vessels in the skin. The fluid build-up in the abdomen may develop into spontaneous infections. More serious complications include hepatic encephalopathy, bleeding from dilated veins in the esophagus, stomach, or intestines, and liver cancer.

The Hepatitis C Trust is a registered charity in England and Scotland that campaigns on various issues related to hepatitis C. In particular, the charity aims to increase awareness and testing; to provide services on a national and local level to people with, affected by, or at risk of contracting hepatitis C; and to campaign for greater public understanding of the impact of hepatitis C. It is the only national hepatitis C-specific charity in the UK and has offices in London and Edinburgh.

A liver support system or diachysis is a type of therapeutic device to assist in performing the functions of the liver. Such systems focus either on removing the accumulating toxins, or providing additional replacement of the metabolic functions of the liver through the inclusion of hepatocytes to the device. This system is in trial to help people with acute liver failure (ALF) or acute-on-chronic liver failure.

References

  1. 1 2 "The European Liver Patients' Association (ELPA) | Coalition for Global Hepatitis Elimination". www.globalhep.org. Retrieved 2022-01-11.
  2. 1 2 "European Liver Patients Association". MICROB-PREDICT. Retrieved 2022-01-11.
  3. "European Liver Patients' Association (ELPA) | LobbyFacts Database". lobbyfacts.eu. Retrieved 2022-01-11.
  4. "Gegevens van de geregistreerde entiteit | KBO Public Search". kbopub.economie.fgov.be. Retrieved 2022-01-11.
  5. "ISO Certificate". www.elpa.eu. Retrieved 2022-01-11.
  6. 1 2 "ELPA - European Liver Patients' Association". www.eu-patient.eu. Retrieved 2022-01-11.
  7. "Policy and Public Health Committee". EASL-The Home of Hepatology. Retrieved 2022-01-11.
  8. "Observers". European Centre for Disease Prevention and Control. Retrieved 2022-01-11.
  9. "3rd Meeting of the Hepatitis B and C Network". European Centre for Disease Prevention and Control. 2015-02-16. Retrieved 2022-01-11.
  10. "EMA Patients' and Consumers' Working Party".
  11. "Pharmacovigilance Risk Assessment Committee".
  12. "VHPB Advisors | Viral Hepatitis Prevention Board". www.vhpb.org. Retrieved 2022-01-11.
  13. "Partners". www.euro.who.int. Retrieved 2022-01-11.
  14. "A-TANGO - featuring G-TAK, a novel combinatorial therapy for ACLF". A-TANGO. Retrieved 2022-01-11.
  15. "Cordis Europe | A-Tango Project".
  16. "Cordis Europe | Topic - New interventions for Non-Communicable Diseases".
  17. "COBALT Study". www.elpa.eu. Retrieved 2022-01-11.
  18. "Studies | EF Clif | European Foundation for the study of chronic liver failure". EFCLIF. Retrieved 2022-01-11.
  19. "Home". DECISION. Retrieved 2022-01-11.
  20. "Cordis Europe | Decision Project".
  21. 1 2 "Cordis Europe | Topics - Systems approaches for the discovery of combinatorial therapies for complex disorders".
  22. "Escalon Project". escalon.eu. Retrieved 2022-01-11.
  23. "Cordis Europe | Escalon Project".
  24. "Cordis Europe | Topic - Translational collaborative cancer research between Europe and the Community of Latin American and Caribbean States (CELAC)".
  25. "Research group/lab - Chronic viral hepatitis and liver cancer". www.erasmusmc.nl. Retrieved 2022-01-11.
  26. "A cheap, fast, non-invasive method to diagnose liver cirrhosis in primary care". A cheap, fast, non-invasive method to diagnose liver cirrhosis in primary care. Retrieved 2022-01-11.
  27. "EiT Health | FiSPlat".
  28. "EiT Health | Topic - Produc and Service Development".
  29. "Galaxy". SDU. Retrieved 2022-01-11.
  30. "Cordis Europe | Galaxy Project".
  31. "Cordis Europe | Topic Understanding disease: systems medicine".
  32. "IP-Cure-B".
  33. "Cordis Europe | IP-Cure-B Project".
  34. "LIVERHOPE". www.liverhope-h2020.eu. Retrieved 2022-01-11.
  35. "Cordis Europe | LiverHope".
  36. "Cordis Europe | Topics - New therapies for chronic diseases".
  37. "Consortium Partners". LiverScreen. Retrieved 2022-01-11.
  38. "Cordis Europe | LiverScreen project".
  39. "Cordis Europe | Topics - Towards risk-based screening strategies for non-communicable diseases".
  40. "Cordis Europe | MicroB-Predict Project".
  41. "Cordis Europe | Topic - Exploiting research outcomes and application potential of the human microbiome for personalised prediction, prevention and treatment of disease".
  42. "Launch of the Euro Hepatis Care Index" (PDF).
  43. pessina (2020-12-17). "European Liver Patients' Association (ELPA) Launches Call to Action Report for the Treatment of Hepatic Encephalopathy". Adnkronos. Retrieved 2022-01-11.
  44. "The 2016 Hep-CORE Report: Monitoring the implementation of hepatitis B and C policy recommendations in Europe | HCV Action". www.hcvaction.org.uk. Retrieved 2022-01-11.
  45. HEP C From Hell to Hope , retrieved 2022-01-11
  46. "Launch of the White Paper on Hepatic Encephalopathy" (PDF).
  47. "Initiative". Have your say. Retrieved 2022-01-11.
  48. Hepatology, The Lancet Gastroenterology & (2022-01-01). "Improving liver cancer care across Europe". The Lancet Gastroenterology & Hepatology. 7 (1): 1. doi: 10.1016/S2468-1253(21)00443-X . ISSN   2468-1253. PMID   34895503. S2CID   245056411.
  49. "Liver patient advocates to Europe's cancer community: can we talk? | Cancer World Magazine". 2021-12-10. Retrieved 2022-01-11.