DBA UK has processed a registration for the European Network for Rare and Congenital Anaemias (ENERCA). This will hopefully give us greater Europeans connections, expand the scope of DBA UK as well as future research and care programmes.
You can find ENERCA here – http://www.enerca.org/
From their site –
“ENERCA is an acronym for European Network for Rare and Congenital Anaemias. It started back in 2002, funded by the European Commission, with the purpose of offering an improved public health service to professional medical practitioners and patients in every aspect of rare anaemias.
ENERCA is currently in its fourth phase (e-ENERCA), which started in september 2013. Its main objective is to provide professionals and patients with e-Health tools to ensure the same level of access to rare anaemias services across Europe. e-Health services will be developed through the implementation of three e-platforms endorsed on the ENERCA website.
The strategic relevance of e-ENERCA is the participation of health professionals, patients, health authorities and other stakeholders of all Member states in the design, validation and implementation of new e-Health services addressed to improve the tackle of rare anaemias. This will be undertaken by assuring the adequacy of the new proposed tools and services with the social, cultural and policy context according to the new Directive on Cross-Border Health Care (2011/24/EU).
Moreover, collaborative efforts will be undertaken to create a unique European registry for rare anaemias. As a contribution to the programme, e-ENERCA will take an action to decrease the cross-border health threats currently existing for information, samples and patient’s mobility reducing health inequalities between Member states. The establishment of a European Reference Network in rare anaemias will facilitate the effective implementation of the new e-platforms.”