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ENERCA enters a new era: e-ENERCA

The new phase of the project started in September 2013 and will focus on e-Health tools for rare anaemias

September 25, 2013

After three successful phases of the project, which started back in 2003, e-ENERCA will develop during the next three years modern e-Health tools for a better management and knowledge of rare anaemias.

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Results of the Public consultation on the implementation of European Reference Networks

An online survey on the potential scope of European Reference Networks and the criteria to join them

August 15, 2013

The European Commission promoted a consultation to seek the views of interested parties on the potential scope of European Reference Networks, and the criteria for healthcare providers wishing to join them. The consultation consisted of an online survey which was open for submission for 12 weeks, between November 2012 and February 2013. The results show a wide consensus in the main aspects to consider among the contributors.

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Join the 5th European Symposium on Rare Anaemias next November

The symposium will take place in Ferrara (Italy), with the 1st Italian Thalassaemia Meeting for Patients and Health Professionals

August 2, 2013

ENERCA, the Italian Federation of Associations for Thalassaemia and Sickle Cell Disease (UNITED) and the Thalassaemia International Federation (TIF) are glad to invite you to aunique chance to access up-to-date knowledge and work in a transversal environment.

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New educational publications by the Thalassaemia International Federation

TIF collaborates with ENERCA in the creation of tools such as the White Book

July 24, 2013

The Thalassaemia International Federation (TIF) works to ensure equal access to quality health care for every patient with thalassaemia and other haemoglobin disorders across the world. One of the actions to achieve it is providing educational material with concise up-to date information on all aspects of thalassaemia. 

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Executive Summary of the 8th Meeting of the EUCERD now online

A number of key topics were presented and discussed

July 8 2013

The 8th Meeting of the European Union Committee of Experts on Rare Diseases (EUCERD) was held  on the 5-6 June 2013 in Luxembourg and marked the last meeting of the current mandate.

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EPIRARE workshops to empower professionals to design and manage a rare disease registry

Two interesting offers for next September and October

July 1 2013

EPIRARE (European Platform for Rare Disease Registries) is a three-year project co-funded by the European Commission. One of its lines of activity is the organizations of courses and workshops to empower professionals to design and manage a rare disease registry.

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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

Members of the ENERCA network have participated during a year, in collaboration with the TIF, in the development of a policy report that was presented at the European Parliament on June 26th. 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.

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European Reference Networks were at the heart of the debate during the EURORDIS Membership Meeting

The event covered the most important challenges in the fight against rare diseases

June 7, 2013

The EURORDIS Membership Meeting 2013, which took place in Dubrovnik between May 30 and June 1, was a new opportunity to create synergies between patients and professionals and to discuss about the new tendencies in rare diseases management.

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The impact of migrations on the health services for rare diseases in Europe

Free population movements are an important challenges to global health

June 5, 2013

Based on the example of haemoglobin disorders, members of the ENERCA network have published a work in The Scientific World Journal analyzing the impact of migrations on the health services for rare diseases in Europe. The authors examined the degree to which European health services have responded to challenges such as the introduction of haemoglobinopathy genes into the population. 

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Prof. Renzo Galanello died at 65, being a great figure and an international professional reference in Rare Anaemias

He was an outstanding ENERCA partner and we will miss him

May 17, 2013

We express our condolences for the loss of Professor Renzo Galanello. From the Clinical Department he directed at University of Cagliari - Ospedale Regionale per le Microcitemie (Cagliari, Italy), he became a reference for all of us in general paediatrics and paediatric haematology. His interest and effort to fight Rare Anaemias is an inspiration for all the ENERCA members.  

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