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.
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.
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.
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.
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.
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.
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.
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.
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.
February 1st 2013
DG Health & Consumers is launching a public consultation targeted to stakeholders on the implementation of European Reference Networks (ERN). It focuses in particular on the criteria to be considered according to Article 12 of the Directive 2011/24/EU on the application of patients' rights in cross-border healthcare, which requires the Commission to adopt a list of criteria that the networks must fulfill, and the conditions and criteria which providers wishing to join networks must fulfill.