TIF Collaborations

International Network for Liver

The increasing life expectancy of thalassaemia patients, due to major advancements in the last 40 years in the areas not only of the clinical management of thalassaemia but also in the monitoring of disease related complications, has created the necessity to establish an International Network for Liver.

This Network constitutes of the following activities undertaken by the Federation:

Representing perhaps the largest group of multiply transfused patients, TIF has established collaboration with a number of medical specialists in the field of hepatology as well as with other organisations concerned with liver and liver disease.

See more about our collaboration with liver disease orientated patient organisations here.

Read about our cooperation with the European Association for the Study of Liver here.

The promotion of the development of national programmes for viral hepatits, based on the WHA Resolution 63.18 for the prevention and control of hepatitis B and C across the world, is the foundation of TIF’s collaboration with the World Hepatitis Association and the premise for the publication of a focused Position Paper on Chronic Hepatitis C in Transfusion Dependent Thalassaemia.

This Position Paper, has been disseminated to the National Health Authorities in the 56 countries, where TIF has members with the purpose to seek their advice, guidance and collaboration to promote the implementation of international guidelines for the antiviral treatment for individuals infected with HCV, particularly patients with thalassaemia.

Medical experts and liver specialists gathered at a consensus meeting in Nicosia in November 2007 to discuss the increasing burden on chronic hepatitis in patients with thalassaemia. The purpose of the meeting was to investigate whether there was a need to develop and publish specific guidelines for the treatment of chronic hepatitis in transfusion dependent patients and to discuss ways in which to involve patients with thalassaemia in clinical trials of new antiviral agents with the purpose of compiling more specific information on side effects, efficacy etc.

In the context of the 15th International Conference on Thalassaemia & Other Haemoglobinopathies and 15th TIF International Conference for Patients & Parents, which is due to take place in Abu Dhabi (United Arab Emirates) on 20-23rd October 2013 is organising a satellite session on the “Global Status of Blood Safety and Viral Hepatitis Control Programmes, with focus on Transfusion Dependent Haemoglobin Disorders”.

The session has been developed in collaboration with and with the support of the World Health Organisation (WHO) , International Society for Blood Transfusion (ISBT), European Association for the Study of Liver (EASL), World Hepatitis Alliance (WHA), European Liver Patient Association (ELPA), and Hepatitis B & C Public Policy Association.

TIF has participated and organized several events and conferences regarding the promotion of Hepatitis regarding prevention, diagnosis, access to treatment, available information and the social attitudes towards patients.

It has participated in conference and seminars that have been organized by the European Liver Patients Association (ELPA), European Association for the Study of Liver (EASL), World Hepatitis Alliance, and Hepatitis B & C Public Policy Association.

24 – 28 April 2013/ The International Liver Congress, organized by the European Association for the Study of Liver, in Amsterdam (Netherlands), was attended by Mr George Constantinou (TIF Assistant Secretary), Mr Ivan Ivanov (TIF Board Member) and a TIF staff member.

19 – 20 June 2013/ A Multi-stakeholders meeting: “Pathways to provide access to novel HCV compounds to people for who they are not yet authorized, but who have no alternative treatments”, organized by the European Liver Patient Association (ELPA) and European AIDS treatment group in Brussels (Belgium) and was attended by Mr George Constantinou, (TIF Assistant Secretary).

5-7 December 2012/ Summit Conference Hepatitis B & C in Mediterranean and Balkan Countries, organised in the context of the Cyprus Presidency of the Council of the EU in Nicosia (Cyprus) was attended by Dr Androulla Eleftheriou (TIF Executive Director) and Dr Michael Angastiniotis (TIF Medical Advisor). Read the Conference Report here.

6 November 2012/ Euro Hepatitis Care Index Launch Event, organised by the European Liver Patients Association (ELPA) in Brussels (Belgium) was attended by Dr Androulla Eleftheriou (TIF Executive Director) and Mr Ivan Ivanov (TIF Board Member). Read the Report here.

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