Mission and Vision

ENERCA > Mission and Vision

Vision

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).

Mission

The following are ENERCA's mission points.

Diagnosis of rare anemias

To help the diagnosis of rare anemias, especially the ultra rare, by direct consultation via email, “Helpline” and by the the EuroBloodNet IT Platform for Clinical Consultations between ERN Members called Clinical Patient Management System (CPMS). The CPMS is a secure Software as a Service (SaaS) that enables health professionals to enroll patients using comprehensive data models. Health professionals can use the CPMS to collaborate actively and share patient within and across ERNs.

Development of Pan-European Quality Assessment Scheme

To contribute to the development of Pan-European Quality Assessment Scheme for rare procedures used for the diagnosis of rare anaemias by providing a logistic support to the National (UK) External Quality Assessment Schemes (NEQAS) Organisation who will undertake the development of the Quality Control of RBC Pyruvatekinase (PK) activity measurement for clinical laboratories (starting in 2019).

Postgraduate training in RAs

To contribute to postgraduate training in RAs through educational programs and the Postgraduate Master on Rare Anaemias and Related Disorders offered by the University of Barcelona. A contact with ERASMUS learning platform has established through the EQUALITY and Equality PLUS Projects on thalassaemias for medical graduates training. One important objective of ENERCA is to increase the interaction with the countries of Eastern Europe non EU members to and facilitate their participation in these educational and training activities

Organization of Research and Development Projects

To participate in the Organization of Research and Development Projects.

Governance

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.

Contact EuroBloodNet member consortium
Contact rare diseases organisations

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.

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