March 17, 2014
All three countries presented have recently presented their Plans and Strategies in the fight against rare diseases. This kind of documents organizing the fight against rare diseases in European countries are necessary to reach a more harmonized and effective clinical care.
February 24, 2014
The European School of Haematology (ESH) recently shared online the Interactive Poster Sessions from the Annual Meeting 2013, which was held in New Orleans, Louisiana. Watch these interesting sessions online and receive up to date knowledge on rare anaemias.
February 17, 2014
28 February 2014 marks the seventh international Rare Disease Day coordinated by EURORDIS. Hundreds of patient organisations from more than 70 countries and regions worldwide are planning awareness-raising activities. The traditional video to present the new campaign is out. Again, it is encouraging, heartfelt and beautiful.
February 10, 2014
A detailed report concludes that, despite the improvements reached, a tailored, comprehensive, holistic approach to haemoglobinopathies is not equally applied across the EU members. The document was developed by a group of experts from ENERCA and TIF, in collaboration with the International Organization for Migration (IOM) and sponsored by Novartis Farma.
February 6, 2014
EPIRARE (European Platform for Rare Disease Registries) encourages the adoption of the EU Council Recommendation on rare diseases (2009/872/CE), which recommends support of registers and databases for epidemiolocial purpose. Keep on reading to view an interesting video with interviews to explain the urgency of building new registry initiatives in rare diseases.
December 20 2013
Horizon 2020, presented a few days ago, aims to address the needs of specific population groups, including those suffering from rare diseases, and ensure access to effective and competent health and care systems. It is a new chance to create an environment to fight rare diseases more efficiently.
December 15, 2013
The 5th European Symposium on Rare Anaemias joined in Ferrara (Italy) 200 attendants, including patients and experts. Now you can access most of the presentations through the ENERCA website. The event, celebrated in November 15th – 16th, is an activity to disseminate up-to-date knowledge on rare anaemias and, at the same time, increase their awareness. Its organizers were the European Network for Rare and Congenital Anaemias (ENERCA); the Italian Federation of Associations for Thalassaemia and Sickle Cell Disease (UNITED); and, the Thalassaemia International Federation (TIF).
November 29, 2013
The ENERCA experts have published a consensus document with recommendations for a better management of Sickle Cell Disorders and Haemoglobinopathies. The ENERCA recommendations are oriented to medical staff expert as well as non-experts in the field, offering objective and reliable information for the management of these diseases. The elaboration of such document has been coordinated by Dr.Béatrice Gulbis within the ENERCA3 WorkPackage 4.
November 27, 2013
The latest advances in the diagnosis of hemoglobinopathies and other rare anemias, the clinical management of severe hemoglobinopathies, as well as all aspects related to the prevention and treatment of rare anaemias, met recently in Barcelona (Catalonia, Spain). Now you can download the presentations from the I Spanish National Congress on Rare Anaemias and Related Syndromes at the Training section of the ENERCA website.
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.