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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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The Thalassaemia International Federation celebrates the International Thalassaemia Day

May 10, 2013

The 8th of May is a very special day dedicated both to commemorate the thalassaemia patients who are no longer with us and to celebrate all those patients fighting everyday for their right to a better quality of life. That is the spirit of the decision made by the Thalassaemia International Federation (TIF) to adopt one day of the year to spread awareness and knowledge on aspects of prevention and management of Thalassaemia.

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Guidelines for the Management of Patients with Beta-Thalassemia Major present meaningful variations among countries

April 16, 2013

The clinical guidelines are documents that aid medical professionals in decision making. When it comes to rare diseases, it is difficult to find devoted international clinical guidelines. For this reason four authors, including the ENERCA partners Dr. Michael Angastiniotis, Dr. Androulla Eleftheriou and Dr. John B. Porter, overviewed currently available guidelines for the management of Beta-Thalassaemia Major and explored apparent similarities and differences between them.

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Executive Summary of the 7th Meeting of the EUCERD now online

April 10, 2013

The meeting saw the unanimous adoption of the EUCERD Recommendations on European Reference Networks for Rare Diseases, which will feed into the work of the Cross-Border Healthcare Expert Group, currently in the process of aiding the European Commission implement the Cross-Border Healthcare Directive.

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FEDER suggests 13 initiatives to support rare diseases patients

They are the result of consensus between over 250 associations of patients with rare diseases

March 8th, 2013

The Spanish Federation for Rare Diseases (FEDER) has proposed to the Spanish Government a set of 13 measures aimed at improving the quality of life of rare diseases patients and give them the support they need. The list of initiatives includes promoting research on these diseases, declaring them chronic diseases and exempting affected families from pharmaceutical copayment.

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EU provides €144 million for new research on rare diseases

The selected projects bring together over 300 participants from 29 countries in Europe and beyond

March 4th, 2013

The European Commission, on Rare Disease Day 2013 February 28th, announced €144 million of new funding for 26 research projects on rare diseases. The selected projects bring together over 300 participants from 29 countries in Europe and beyond, including teams from leading academic institutions, SMEs and patients' groups. The goal is to pool resources and work beyond borders, to get a better understanding of rare diseases and find adequate treatments.

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Watch the Official Rare Disease Day Video

Join the sixth Rare Disease Day that takes place on 28 February 2013

February 12th 2013

The Official Rare Disease Day Video is a must see. Join the sixth Rare Disease Day that takes place on 28 February 2013 around the globe. This year's slogan "Rare Disorders without Borders" emphasizes the need for international cooperation.

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