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ENERCA publishes a report in the new "Journal of Rare Disorders: Diagnosis and Therapy”

The new open access Scientific Journal is focused on articles of rare and chronically debilitating diseases

August 25, 2015

ENERCA, always at the forefront of promoting expertise on rare anaemias, has published an article entitled: “ENERCA: The European Network for Patients with Rare Anaemias.” on the first number of the Journal Rare Disorders: Diagnosis & Therapy (Vol 1, July 2015), the new open access Scientific Journal focused on articles of rare and chronically debilitating diseases.

The report, developed by Prof. Joan Lluis Vives Corrons, Head of the project, and Dr. Maria del Mar Mañú, Project manager, presents the main contribution of the network to the field of Rare Anaemias (RA) as well as the Health Services provided in the last decade.

In the fourth phase of ENERCA, e-ENERCA, the e-health information and communication technologies that are currently being developed (e-Registry, e-Learning and e-Medicine), will assure the same access to health services RA across Europe. These three e-platforms will be endorsed in our website proximately.

After more than 10 years of experience, ENERCA is ready to go a step forward through the consolidation of the European Reference Network (ERN) of Expert Centres in Rare Anaemias that will lead to the identification of needs and priorities for clinical management of these diseases as well as education and social care in the fields of the different rare anaemias: Sickle cell disease, thalassaemia syndromes and very rare anaemias.

Undeniably, ENERCA next stage is to contribute to the establishment of a ERN in rare anaemias, allowing health professionals an easy access to recognized centres of expertise in each rare anaemia category and providing new opportunities to undertake innovative and useful actions based on the ERN.
 

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