According to the European Commission (EC) a disease is considered to be rare when its frequency in the population is less than 5 cases in 10,000 individuals. However, it is estimated that, at any one time, the total sum of rare diseases affects about 6% of the European population. This percentage is currently increasing in many European geographical areas due to immigration. Therefore while these diseases are individually uncommon, when considered together, they represent a considerable cause of concern.
Until ENERCA, a large-scale network of experts and specialists working in the specific topic of rare anaemias did not exist. That meant a serious lack of information and knowledge-related problems for both patients, their relatives and for general practitioners and doctors as well. The consequences of these problems include:
ENERCA has started in order to address all these issues.
The first phase of ENERCA (European Network for Rare Congenital Anaemias) started back in October 2002 and ended in April 2004. It allowed the set up of an officially endorsed website (www.enerca.org) and restricted access areas to professionals. This tool was designed to:
The second phase of ENERCA (European Network for Rare and Congenital Anaemias) run from September 2005 to August 2008. In addition to congenital anaemias, this second phase also covered all rare causes of anaemia, whether hereditary or acquired. The main results were:
The third phase of ENERCA (ENERCA 3) , which stared in July 2009, established an European Network of Experts Centres in Rare Anaemias to link the Existing European centres and became a platform for providing both information and services to health professionals, patients, citizens, stakeholders interested in rare diseases, authorities and pharmaceutical industry managers. The main results were:
A new phase of ENERCA started in september 2013, e-ENERCA. It is based, in part, on ENERCA 3 achievements, but adapted to the recent Directive on patients rights in cross-border healthcare. Accordingly, it is not just a continuation of ENERCA 3, but a clear real step forward to the consolidation of the European Reference Network of Centres of Expertise on Rare Anaemias (ERN-Rare Anaemias).
e-ENERCA is intended to incorporate the innovative e-health information and communication technologies (ICT) to create a pan-European interoperable e-health platform for teleexpertise/telediagnosis, electronic registry/epidemiological electronic health records (EHR) and e-learning. The fourth phase of the ENERCA project creates a strategic collaboration environment for promoting the participation of European health professionals, researchers, medical education stakeholders and patients in the design and validation of new health care services.