Advocacy and Policy Issues
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.
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:
- Position Paper 5.2: Addressing the Management of Non-Transfusion-Dependent Thalassaemias (NTDTs)
- Position Paper 5.3: Counterfeit Medicines & Patients’ Safety – A global threat
- Position Paper 5.4: Patients Rights
- Position Paper 5.6: Chronic Hepatitis C in transfusion depended thalassaemia (Click here for the Executive Summary)
- Executive Summaries of all position papers
- Preparation of lay material for patients/parents/carers on the themes of the above-mentioned position papers
- The use of Generic Drugs in Thalassaemia: Click here to read it.