European Network for Rare Anaemias

TIF has played a leading role as a partner in the European Commission-funded project ENERCA (European Network for Rare and Congenital Anaemias). The project aims to bring experts together to improve public health services in the field of rare anaemias and, more particularly, to identify criteria and support national and European efforts to establish new and/or strengthen existing Centres of Expertise in rare anaemias, which including haemoglobinopathies, across the EU, with the aim of developing European Network of Expert Centres Rare Anaemias.

The final result of this phase of the project will be a white paper on the requirements of a reference centre or centre of expertise for rare anaemias. In formulating the recommendations, the expectations of patients from such a centre were considered, according to patient responses to a prepared questionnaire.

e-ENERCA

TIF is preparing for the ‘kick-off’ meeting of a new project, better known as the “New e-Health Services for the European Reference Network on Rare Anaemias” (“e- ENERCA”) is funded by the European Commission’s Executive Agency for Health and Consumers under the call for proposals 2012 – second program of community action in the filed of health (2008-2013).

The general objective of e-ENERCA project is to assure the access of professionals and patients to the same level of services, independently from the country of practise and the origin of the patient. For this, several e-health information and communication technologies tools will be developed, aiming to comprehensively collect clinical and epidemiological data across Europe and to share knowledge and expertise among Member States with specific measures foreseen to include the New EU member states.

TIF is the leader of the Work Package on European epidemiological surveillance for major rare anaemias which aims to develop a centralized electronic registry service for patients with haemoglobin disorders.