Advocacy and Policy Issues

TIF participates actively in the development and/or amendment of policies at the international and European level, in the areas listed below, thus ensuring that the voice of the national and global thalassaemia communities are taken into consideration by legislators and policy makers at the national, regional and international level. The ultimate goal is to ensure that the health and quality of life of patients with thalassaemia are continuously improved, with their fundamental rights of access to quality care safeguarded. At present, TIF is involved in the following policies
HAEMOGLOBINOPATHIES ON THE MOVE: IS EUROPE READY? A POLICY ANALYSIS OF 10 EUROPEAN COUNTRIES 1444599192i-zdhkffm-m-300x199

The launching of the policy report Haemoglobinopathies on the Move: Is Europe ready? A policy analysis of 10 European Countries was successfully carried out on 26 June 2013 at the European Parliament. Hosted by MEPs Ms Antigoni Papadopoulou (Cyprus) and Ms Marina Yannakoudakis (UK), stakeholders gathered to hear the outcomes of a year long project involving the interviewing of over 20 key persons in 10 European countries regarding the healthcare services provided to patients with haemoglobin disorders in the EU. The report was compiled jointly by TIF and ENERCA. Dr Androulla Eleftheriou and Dr Michael Angastiniotis actively participated in the meeting, presenting on behalf of the experts the findings of the report.

Read the Full Report & Executive Summary

Agenda

Presentation by the Experts

Meeting Report by Dr Michael Angastiniotis, TIF Medical Advisor

Press release by Mrs Marina Yannakoudakis, UK MEP

TIF actively engages in the process of developing position papers on key issues which concern patients with thalassaemia, seeking to maintain and improve their quality of life and access to treatment.

Each position paper is formulated following a period of intense research and consultation with our members worldwide. Upon completion, the position papers are disseminated to key stakeholders and health authorities at the national, regional and international level with the view to implement the necessary actions to tackle the issue at hand. Furthermore, they are circulated amongst TIF’s Global Network of Health Professionals and, most importantly, they are distributed to thalassaemia associations across the world, encouraging patient advocates to develop a productive dialogue with their national health authorities, medical community, research institutes and industry, advocating for the implementation of the given position paper.

Important definitions in areas of concern for TIF

Click here to read a list of important definitions in areas of concern for TIF.

We invite you to read our Position Papers found below:

Upcoming:

  • Executive Summaries of all position papers
  • Preparation of lay material for patients/parents/carers on the themes of the above-mentioned position papers

Reports:

  • The use of Generic Drugs in Thalassaemia: Click here to read it.