History

How and why did ENERCA begin?

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 now, a large-scale network of experts and specialists working in the specific topic of rare anaemias has not existed. That creates 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:

Pointless referrals
Inappropriate or uncalled-for investigations
Delayed or inappropriate treatment
Avoidable ill health and disability
Needless distress for patients and their families
Wasted health care and research opportunities

ENERCA has started in order to address all these issues.

The three developing phases of ENERCA

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:

Provide patients, their relatives, and care providers with clear and concise information, in their own language, about the different rare congenital anaemias known so far.
Provide physicians with a rapid protocol for the identification and diagnosis of rare congenital anaemias.

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 development of a pilot study to initiate the mapping of existing expert centres for rare anaemias in Europe.
The creation of a personal medical alert card (MAC) as an aid for a prompt response in case of emergency.
The creation of a database collection of haemoglobinopathies as the basis for the future development of the European registry of rare anaemias.
The promotion of the neonatal screening of haemoglobinopathies in those European countries without existing epidemiological information. This has led to the knowledge of a prevalence of haemoglobinopathies in Catalonia and Latvia.
The dissemination of ENERCA knowledge across Europe by providing an online forum and the organisation of an annual European symposium on rare anaemias.
The establishment of a quality assessment pilot study for red blood cell morphology and quantification of haemoglobins A2 and F.
The publication of ENERCA newsletters on relevant aspects of the management of rare anaemias.
Consolidation of the website: www.enerca.org

ENERCA is currently in its third phase (ENERCA 3) , which stared in July 2009 and will end in June 2011. Its objective is the establishment of an European Network of Experts Centres in Rare Anaemias that will link the Existing European centres and will be used as a platform for providing both information and services to health professionals, patients, citizens, stakeholders interested in rare diseases, authorities and pharmaceutical industry managers.

Enerca is a project in the Health Programme 2008 of the European Commission.