ENERCA is an independent member of the EuroBloodNet Advisory Board (EAB) and its main objectives are to promote excellence for best health care of patients with rare anaemias by improving the following main topics. ENERCA started 20 years ago (2002) as a small European Commission (EC) project composed out of medical professionals who work together to increase health by bundling expertise in diagnosis and treatment of rare anemias (RAs).
The EC ENERCA Project finished in September 31, 201and after EC Call for the creation of European Reference Networks (ERNs), the ENERCA Coordination Team decided to apply for an ERN of Rare Hematological Diseases under the name of EuroBloodNet . The Governance structure of EuroBloodNet has contributed to the establishment of “transversal fields of action” (TFA), and to the nomination of sub networks responsible persons (https://www.eurobloodnet.eu/index.php). There are strong differences among MS in the recognising process of their own Healt Care Providers (HCPs) but there are also many European Centres of Expertise (CoE) in RAs ,not pertaining to HCP, that accomplish the Good Practice recommendations for Centres of Expertise in RAs published in the ENERCA WHITE BOOK (Prodrug Multimedia, S.L.2014 Barcelona).
The following are ENERCA's mission points.
ENERCA is a member of the independent EuroBloodNet Advisory Board and its Governance is based on the contacts with EuroBloodNet Subnetwork Coordinators, and with different Organisations involved in patients advocacy and RA patients health servicesUp to now.
ENERCA has more than 200 contacts and collaborating people worldwide many of they are pertaining to Expert Centers as defined in “ENERCA WHITE PAPER” but not pertaining to the officially recognized European Health Care Providers (HCPs). Accordingly, they require a personal password to take profit from EuroBloodNet advantages.
|Beatrice Gulbis (Belgium)||RBC defects|
|Maria Domenica Cappellini (Italy)||RBC defects|
|Régis Peffault de Latour (France)||Erythropoietic defects|
|Graça Porto (Portugal)||Haemochromatosis and iron metabolism defects|
|Dorine Swinkels (Sweden)||Haemochromatosis and iron metabolism defects|
|Raffaella Colombatti (Italy)||TFA Cross border health coordinator of non-oncological hub|
|Achille Iolascon (Italy)||TFA Best practices and Erythropoietic defects|
|Barbara de la Salle (France)||UK NEQAS for General Haematology|
- EuroBloodNet Subnetworks: To provide advice for integrate Red Blood Cell and Bone marrow erythropoietic defects for individual patients view , when necessary.
- Eurordis: As an official member.
- Orphanet: As oficial member and Web “help-line” provider for rare and complex anaemias diagnosis (Direct link with FEDER).
- RD-Connect: As official member.