October 29 2013
Rare diseases patients and their families met with leading Spanish experts last October 18, 19 and 20 in Totana (Murcia, Spain). The aim of the conference was again to raise awareness on the situation of people with rare diseases, within the VI Spanish Congress on Rare Diseases, organized by the Spanish Federation for Rare Diseases (FEDER) and the Association for Rare Diseases and other severe developmental disorders (D' Genes), in collaboration with Genzyme Foundation. HRH The Princess of Asturias inaugurated the meeting.
October 22, 2014
There is a high demand for new tools for improved diagnosis and monitoring of disease progression. This is where CoMMiTMenT (Combined Molecular Microscopy for Therapy and Personalized Medication in Rare Anaemias Treatments), a new EU-funded research project, comes into play. ENERCA is an active part of the CoMMiTMenT Network.
October 16 2013
After 10 years of history, e-ENERCA is not just a continuation of ENERCA 3 but a clear step forward to the consolidation of the European Reference Network of Centres of Expertise on Rare Anaemias. The Kick-off Meeting of e-ENERCA was held on October 14th in Luxemburg.
October 12, 2013
Interaction between patients and professionals is positive, empowering both of them and underlining the influence of patients as a collective. The voices of patients must be heard to offer a more efficient response to rare diseases from the medical community.
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.
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.
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.
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.
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.
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.