News

European Parliament policy report: "Haemoglobinopathies on the move. Is Europe ready?"

The report could have a direct impact in decision making at the European Parliament

June 28 2013

policy report:

Members of the ENERCA network have participated during a year, in collaboration with the Thalassaemia International Federation (TIF), in the development of a policy report that was presented at the European Parliament on June 26th. The report is entitled Haemoglobinopathies on the Move: Is Europe ready? A policy analysis of 10 European Countries. Haemoglobin disorders have an immense social and economic repercussion to the public health budget of Member States as well as to the EU budget in general.

The presentation was hosted by members of the European Parliament Ms Antigoni Papadopoulou (Cyprus) and Ms Marina Yannakoudakis (UK). Stakeholders gathered to hear the outcomes of a project including the opinion of over 20 key persons in 10 European countries regarding the healthcare services provided to patients with haemoglobin disorders in the EU. The members of ENERCA, which has been a pivotal contributor to the compilation of information included in this report, actively participated in the Meeting.

ENERCA has allocated many efforts on the analysis of the current regulations regarding legal and ethical issues on the medical practice at European and national level. Its members also analysed the services available in laboratories and medical centres for the diagnosis and management of patients with haemoglobinopathies and thalassaemias, including the existing external quality assessment schemes available for laboratory diagnosis and the patient’s expectations on centres of expertise. 

All this information was included in a position paper (White Book) entitled ENERCA Recommendations for Centres of Expertise and European Reference Network on Rare Anaemias, which will be available soon.  The White Book provides stakeholders involved in the national Plans for Rare Diseases and European Commission with the necessary methodology for identifying the Centres of Expertise to become nodes of a future Rare Diseases European Reference Network (RD ERN) on Rare Anaemias (RAs).

ENERCA has also actively contributed to continuous medical education of health professionals in haemoglobinopathies and thalassemias, together with the European School of Haematology (ESH), and to the clinical practice and epidemiology of haemoglobinopathies and thalassemias. With the presentation of the new policy report, all these efforts could have a direct impact in decision making at the European Parliament. A prepared Europe is a healthier Europe, and ENERCA network members will keep working to achieve this objective.

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