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

ASSCAT, Spain

ALBI, France,

AIROS, Italy

Hetz, Israel 

PSC Partners USA

PSC Partners Canada

PSC Support Australia

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PDF DOWNLOAD – LINK

Annual Report 2018 [PDF]

Latest updates on COVID-19 vaccines

Latest updates on COVID-19 vaccines

ELPA, as part of the Patients’ and Consumers’ Working Party (PCWC) at the European Medicines Agency (EMA) would like to share with you EMA’s recent communications on COVID-19 vaccines:

All the latest updates on COVID-19 vaccines and treatments are available by clicking here.

COBALT Study

COBALT-Study

The Covid-19 pandemic has disproportionately affected liver patients – patients with chronic liver disease have around 5-times increased mortality from Covid-19 than individuals without liver disease. Therefore, the development of vaccines is a welcome step, but we don’t yet know if they are fully protected in liver patients. Early data from the US demonstrates that two-thirds of liver transplant patients don’t have detectable antibodies to the coronavirus after one dose of mRNA vaccine (Boyarsky et al 2021).

 

There is, therefore, an urgent need to determine how effective these vaccines are in liver patients, to determine if extra protection is needed – such as extra vaccine doses, additional medications, or continued shielding. The COBALT study is taking place across Europe to urgently address this question by measuring responses to vaccination in liver patients. It is designed to report back quickly to inform patients and policy-makers, although further support is needed to accelerate this process and allow policy decisions to be made rapidly.

COVID19 & Liver Disease

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📣📣📣15th Years Liver Patient Voice  2️⃣0️⃣0️⃣5️⃣-2️⃣0️⃣2️⃣0️⃣
Advocacy, Policy, Patients safety, Empowering and supporting ELPA members in #liverdiseases, awareness, prevention, Scientific community support…..
🇪🇺 EU Health and 🇺🇳 WHO Europe level

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ELPA Open call

ELPA Open call

Kindly note, that ELPA is currently looking for an administrative help in Brussels’ office for 2 to 3 days per week.

Brussels based and fluently speaking English and French languages is mandatory!

Preferably we look for person that has experience in working in administration in Brussels.

Job Duties:

  • provide administrative support
  • resolve administrative problems
  • answer and direct phone calls, answer to e-mails
  • maintain and take care of office supplies
  • photo copy and print out document on behalf of other colleague

Key skills required:

  • Fluent in English and French language
  • Proven administrative experiences
  • Excellent written and verbal communication skills
  • Proficient in MS Office
  • Reliability and discretion: you will often learn of confidential matters
  • Ability to work in a team, with international colleagues

Job location:

  • Brussels, Belgium

I would like to kindly ask you to send your application and CV to office@elpa.eu and please put elpa-president@elpa.eu in the copy no later until 2.10.2019.

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Patient Support materials

Patient Support materials

Latest News

Preventing NAFLD-NASH epidemic in EU – patients’ perspective

Preventing NAFLD-NASH epidemic in EU – patients’ perspective

Brussels, 10 January 2019

European Liver Patients’ Association has held a second edition of its NAFLD – NASH meeting on 9th of January 2019. The meeting was hosted by Carlos Moedas, European Commissioner for Science, Research and Innovation and was held in the European Commission in Brussels.

Gathering experts form the field ELPA has continued not only raising awareness on NAFLD – NASH, but has also taken a step further and explored the steps to be taken to prevent the NAFLD – NASH epidemics in Europe. NAFLD, which has become the most common chronic liver disorder in Europe and the U.S., and NASH are seen as lifestyle conditions. Current research suggests that being overweight or obese and
metabolic syndromes such as type 2 diabetes and hypertension are common conditions in patients affected by NAFLD. The prevalence of NAFLD in the general population ranges from 20% to 30% in Europe and will become the leading cause of liver transplantation in the next 10-20 years.
ELPA therefore recognizes this threat to public health and represents efforts of the community in taking the action to establish effective policies for early detection and effective therapies, and put more effort into prevention policies across the European Union.

In his keynote speech Commissioner Carlos Moedas addressed the importance of the research projects in NAFLD, funded by the European Union, such as LITMUS project and Liverhope project. He has additionally highlighted the importance of research in tackling this condition, pointing out to the need for an open access to all the data that is used for science and innovation. Referring to NAFLD, all this could lead to a better diagnostics standard, he concluded.

In order to hear from the experts what is the current state and how to proceed next, we have invited experts from the field to share their knowledge and advice for next steps valuable to patients’ perspective. Prof. Jeffrey Lazarus, Vice-chairman of the EASL International Liver Foundation presented the results from the NAFLD policy review, Prof. Dr. Helena Cortez – Pinto, EU Policy Councillor at European
Association for the Study of the Liver gave a presentation on Screening and referral policy in primary care, Prof. Dr. Quentin M. Anstee, Deputy-Director of the Institute of Cellular Medicine presented the LITMUS, EPoS & the European NAFLD Registry – European
Efforts to Improve the Diagnosis of NAFLD, Prof. Dr. Manuel Romero-Gómez, President of SAPD. Digestive Diseases Unit. Virgen del Rocío University Hospital. SeLiver group at Institute of Biomedicine of Seville suggested strategies to increase awareness and detection of NAFLD, Dr. Jörn M. Schattenberg from the Universitätsmedizin Mainz spoke about the role of nutrition in prevention of NALFD and NASH and Elena Balestra from the European Patients’ Forum empowered present patients’ representatives speaking about the meaningful involvement of patients in tackling NAFLD – NASH. Prof. Dr. Rajiv Jalan from the Institute for Liver and Digestive Health, Division of Medicine, Faculty of Medical Sciences and Editor in Chief of the Journal of Hepatology delivered the conclusions of the meeting.

As a next step, European Liver Patients’Association will produce policy recommendations containing key takeaways from the meeting and will share it with the stakeholders in order to even further emphasize the necessity to adopt measures through which the epidemics of NAFLD and NASH could be prevented.

Documents


Agenda_Preventing NAFLD-NASH epidemic – patients’ perspective [PDF]


NAFLD policy review_Jeffrey V. Lazarus [PDF]


NAFLD screening and referral policy in primary care_Helena Cortez – Pinto [PDF]


LITMUS, EPoS & the European NAFLD Registry – European Efforts to Improve the Diagnosis of NAFLD_Quentin M. Anstee [PDF]


Strategies to increase awareness of NAFLD_Manuel Romero Gomez [PDF]


Meaningful patients’ involvement_Elena Balestra [PDF]


Preventing NAFLD-NASH epidemic in EU – patients’ perspective_CONCLUSIONS_Rajiv Jalan [PDF]


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ELPA’s Members-Team Building

ELPA’s Members-Team Building


Workshops ( team building) for ELPA members (who at the end shared their work experiences for 2018)

At the workshop the members showed their practical use of knowledge for the EU Projects in Liver Diseases and also shared their ideas for future implementations in the EU Projects .

At the end we can say that the Workshop gave us many use full ideas for future projects and in near future we plan to organize as many as possible.