2nd A-TANGO newsletter

2nd A-TANGO newsletter

Thank you to all our supporters!!!

Thank you to all our supporters!!!

There are many different causes of liver disease, which may be linked with liver cancer. Some of the most common include:

  • Alcohol-related liver disease: caused by regularly drinking too much alcohol.
  • Non-alcoholic fatty liver disease: frequently linked to being overweight, which may cause fat to build up in the liver and might lead to liver inflammation.
  • Hepatitis: infection of the liver caused by a virus.
  • Cirrhosis: a late-stage liver disease in which healthy liver tissue is replaced with scar tissue, and the liver is permanently damaged.

ELPA would like to thank all its supporters. Each of them is helping ELPA to focus and work on each of the liver cancer risk factors to lower the incidence of liver cancer.

Together we are stronger!

Let our hearts speak

Let our hearts speak

On October 14th, Cyprus Liver Patients Association held with great success the Charity dinner ‘Let our hearts speak’
The purpose of this dinner was the awareness of the problems faced by transplant patients. As well as their financial support. These patients leave their homes, their jobs, their families, their own children and go abroad to get register on the long Waiting List for an Organ Donor, a Life Donor.The need for a hepatology clinic in Cyprus is urgent!!!
Cyprus Liver Patients Association sincerely thank the couple Mrs. Zenas and Savvas Miliou who gave us their gardens and their overall offer!

Members unanimously approved updates of ELPA Statutes, Codes of Conduct, and Internal Rules

Members unanimously approved updates of ELPA Statutes, Codes of Conduct, and Internal Rules

On February 24, 2022, ELPA held an Extraordinary General Meeting to discuss ELPA Statutes, Codes of Conduct, and Internal Rules changes. The revision of the three documents was necessary to update them to the Belgian Law.

ELPA members from Bosnia and Herzegovina, Cyprus, Croatia, Denmark, Egypt, Finland, Israel, North Macedonia, Poland, Romania, Russia, Serbia, Slovakia, Slovenia, Spain, Sweden, Turkey and the United Kingdom unanimously approved the new ELPA Statutes, Codes of Conduct, and Internal Rules.

The assembly has adopted the new documents in line with the comments and questions from one auditor, three ELPA members (6 questions) and a lively and proficuous discussion among members.

A special thank you goes to Mr Charles-Henri Bernard, Senior Associate, Hogal Lovells company, for his commitment to helping ELPA become a future-proof association

The first patient recruited in the IP-cure-B clinical trial

The first patient recruited in the IP-cure-B clinical trial

The first patient has been recruited in the ANRS HB07 IP-cure-B clinical trial, sponsored by ANRS | Emerging Infectious Diseases and run by the Hospices Civils de Lyon – Hepatology Department, in Lyon, France, in the framework of the IP-cure-B project.

The objective of the EU-funded IP-cure-B project is to develop novel curative concepts for chronic hepatitis B (CHB). The project aims to improve the cure rate of CHB by boosting innate immunity with immune modulators and stimulating adaptive immune responses with a novel therapeutic vaccine. Researchers will also identify immune and viral biomarkers for monitoring patient stratification and treatment response. Integration of biological and clinical data will enable models for the best combination treatment and effectiveness of novel curative therapies concerning disease spectrum and patient heterogeneity. The preclinical platform will be evaluated in humanised mice, combining immune-modulatory strategies to stimulate innate immunity, rescue exhausted HBV-specific T cells and generate anti-HBV adaptive responses. Proof of concept will be obtained in a clinical trial of a combination of novel compounds stimulating innate immunity.

Outcomes for medical experts

The project aims at proposing a treatment paradigm shift with the development of novel combination therapies for CHB with improved cure rates and a better appraisal of novel biomarkers to improve patient selection for treatment and monitoring treatment response.

Outcomes for community

The development of such curative therapies with a finite duration of administration will pave the way towards a universal treatment of all individuals that suffer from chronic HBV infection. It is thus expected to result in a long-term reduction in cost and global burden of CHB (short-term therapy, increased treatment uptake in the infected population, decreased rate of liver complications and mortality).

Outcomes for patient

The project aims at designing and developing novel treatment strategies towards the cure of infection with a shorter duration of treatment. It is expected to result in improved quality of life and decreased social stigma.

The Hospices Civils de Lyon in Lyon, France, is not the only partner running a clinical trial in the framework of the IP-cure-B project, other centers are:

Hospices Civils de Lyon in Lyon (France) Hepatology Department
Universitat Klinikum in Freiburg (Germany) Department of Internal Medicine
Clinic for Internal Medicine II – Gastroenterology,
Hepatology, Endocrinology and Infectiology
Hôpital Saint-Joseph in Marseille (France) Hepato-gastroenterology department
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico in Milan (Italy) Gastroenterology and Hepatology Division
University Hospital of Parma in Parma (Italy) Department of General and Specialized Medical
Vall d’Hebron
University Hospital in
Barcelona (Spain)
Internal Medicine and Hepatology
Hôpital Pitié Salpêtrière
in Paris
AP-HP (France)
Department of Hepato-Gastroenterology
Hôpital de Brabois
in Vandoeuvre les Nancy (France)
Department of Hepato-Gastroenterology

Press contacts:

ELPA: beatrice.credi@elpa.eu

ANRS | Emerging infectious Diseases: information@anrs.fr

Rare Liver Diseases

Rare Liver Diseases

Liver diseases are referred as rare when they affect a small percentage of the general population. Theycan be either genetic (inherited) or auto-immune.Following is a list of some of the more common rare liver diseases:

PBC – Primary Biliary Cholangitis– is mainly found in women and onset is usually found in middle aged women. It affects bile ducts inside the liver. There are treatments available.

PSC-Primary Sclerosing Cholangitis is found more in men (60:40), can be found at all ages and affects the bile ducts inside and outside of the liver. 80 % percent of the patients also have Inflammatory Bowel Disease. Today there are still no effective treatments.

AIH – Auto immune Hepatitis -A chronic disease that causes inflammation in liver when the body’s immune system attacks liver cells. This results in scarring of the liver and finally to liver failure. Treatments can help manage condition, no known cure.

ICP – IntrahepaticCholestasis of Pregnancy, commonly known as cholestasis of pregnancy, is a liver condition that occurs in late pregnancy. The condition triggers intense itching, but without a rash. Itching usually occurs on the hands and feet but can also affect other parts of the body. Cholestasis of pregnancy can make you extremely uncomfortable.

Wilson diseaseA genetic disorder causing excessive copper accumulation in the liver, brain and other organs. Most people with Wilson’s disease are diagnosed between the ages of 5 and 35, but it can affect younger and older people, as well.Wilson disease is fatal without medical treatment. There is no cure, but the condition can be managed. Treatment options include medications, chelation therapy and avoiding foods high in copper.

Acute Hepatic Porphyria,the acute hepatic porphyria is a group of four inherited disorders, each resulting from a deficiency in the activity of a specific enzyme in the heme biosynthetic pathway. In the majority of European countries, the prevalence of acute hepatic porphyria is around 1/75,000. In 80% of cases the patients are female, with the majority aged between 20 to 45 years.

LAL-D – Lysosomal Acid Lipase Deficiency, is a rare. Chronic, progressive inherited disorder. It affects the body’s ability to produce an enzyme called lysosomal acid lipase (LAL). This enzyme is needed for the breakdown of fats (lipids) and cholesterol in the human cells. When the LAL enzyme is missing or deficient, fats accumulate in organs and tissues throughout the body, primarily leading to liver disease and high “bad cholesterol”, which is linked to cardiovascular disease.

Alagille Syndromeis a genetic disorder that can affect the liver, heart, and other parts of the body. One of the major features of Alagille syndrome is liver damage caused by abnormalities in the bile ducts

Biliary Atresiais a rare disease of the liver and bile ducts that occurs in infants. Symptoms of the disease appear or develop about two to eight weeks after birth. Cells within the liver produce liquid called bile.

PFIC- Progressive familial intrahepatic cholestasis is a group of rare disorders which are caused by defect in bile secretion and present with intrahepatic cholestasis, usually in infancy and childhood. These are autosomal recessive in inheritance. The estimated incidence is about 1 per 50,000 to 1 per 100,000 births, although exact prevalence is not known. These diseases affect both the genders equally and have been reported from all geographical areas.


GLOBAL PSC AWARENESS DAY,Strong together, and holding on to Hope– 29th October 2021:

The event will be done in collaboration with following partners – follow ELPA’s social media channels

PSC Support, UK

Forening for autoimmune leverskdommer, Norway,

MagtramFÖRBUNDET, Sweden

Manuais-ja maksaliitto, Finland


Leverforeningen, Denmark


ALBI, France,

AIROS, Italy

Hetz, Israel 

PSC Partners USA

PSC Partners Canada

PSC Support Australia


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Annual Report 2018 [PDF]

Launch of White Paper, Liver Cancer: No Patient Left Behind Jointly with DiCE

Launch of White Paper, Liver Cancer: No Patient Left Behind Jointly with DiCE

Event description

Hepatocellular Carcinoma (HCC) is the world’s 6th most common cancer and the 3rd most fatal. Every year, more than 98,000 European citizens are diagnosed with liver cancer, while around 89,000 die from the disease

The purpose of the White Paper on Liver Cancer is to assist health-policy makers from across Europe in identifying the key priority areas of unmet needs, with a view to implementing best practices for liver cancer patients, based on the currently available evidence.

The White Paper on Liver Cancer has been developed based on extensive research of recent data, expert consultations, and existing expertise within DiCE and ELPA.

DiCE and ELPA call upon all stakeholders across Europe to work together to ensure that best practices are implemented at every stage of the patient pathway in each country, giving every patient with liver cancer the best possible opportunity of a positive outcome.

Join DiCE and ELPA to increase equality of best practice implementation in the prevention, diagnosis, and management of liver cancer across Europe.

Click to Register for Free.


 Download Agenda[PDF]