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Watch the Rare Disease Day video, February 28 is approaching!

This year, Rare Disease Day focuses on the daily lives of patients, families and caregivers who are Living with a Rare Disease under the slogan: Day-by-day, hand-in-hand

February 10, 2015

Every last day of February, Rare Disease Day takes place all over the world. Since first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people with the common objective of raising awareness about rare diseases among population, specialists and media.

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EURORDIS promotes the creation of European Reference Networks to cover every rare disease within the European Union

ENERCA is one of the pilot ERN that will apply for the recognition as an ERN for Rare Anaemias

January 23, 2015

When it comes to rare diseases, having access to experts in the field that provide specific treatments can become a real challenge. With the idea of sharing the knowledge between healthcare professionals across borders in order to have the most recent and reliable information, European Reference Networks are born.

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EUROPLAN II Conference sets the way forward in the Spanish National Strategy for Rare Diseases

The main lines of action that must be followed to improve quality of life of people with rare diseases were discussed within the Conference

December 15, 2014

“We hope that the work carried out in this EUROPLAN II Conference was helpful to transmit the urgent and essential need for rare diseases in Spain to become a social priority, creating concrete lines of action” Juan Carrión, FEDER President.

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SUBMIT A CLINICAL CASE FOR DISCUSSION DURING THE ESH-ENERCA MEETING! Deadline: DECEMBER 15th, 2014

Training Course on Haemoglobin Disorders: Laboratory Diagnostic and Clinical Management January 23-24, 2015 - Barcelona, Spain

December 10, 2014

The ESH-ENERCA course on the Laboratory Diagnosis and Clinical Management of Haemoglobin Disorders will be held in Barcelona on January 23-24, 2015.

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The ENERCA White Book - Recommendations for Centres of Expertise in Rare Anaemias

Already available in our website NOW !

December 9, 2014

ENERCA White Book is a position paper, developed as a deliverable of the ENERCA 3 project that intends to contribute to the creation of a European Reference Network in Rare Anaemias (ERN-RA) by preparation of the recommendations and, in particular, the definition of the criteria that Centres of Expertise (CoE), local centres (LC) and their interrelations have to fulfil as healthcare providers. It has been nourished by all the activities that have been performed over the past ten years within the ENERCA framework.  

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Prof. Joan Lluis Vives Corrons approaches Anaemias to population and presents ENERCA features in Catalan TV

Watch online the coordinator of ENERCA network

December 4, 2014

Prof. Joan Lluis Vives Corrons, coordinator of the ENERCA network was interviewed by the Sant Cugat Television (TV25) in order to approach anaemias to common population and present ENERCA features in the field of rare anaemias. 

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CATGLOBIN concludes the newborn screening for sickle cell disease pilot study in Catalonia

Results have led to the imminent implementation of universal neonatal screening for haemoglobinopathies in the early detection official program

November 25, 2014

CATGLOBIN, Catalan network for the diagnosis and monitoring of haemoglobinopathies and thalassemia is a project funded by Marató TV3. In collaboration with the Public Health Agency of Catalonia,  launched a universal newborn screening for sickle cell disease pilot study in March 2013. Beyond the lifetime of the pilot study the implementation of systematic and universal neonatal screening for haemoglobinopathies in the early detection official program of Catalonia has been imminent and will start in the beginning of 2015.

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The new ENERCA e-Health Services were presented in the 4th Pan European Conference on Haemoglobinopathies & Rare Anaemias

The scientific programme covered a session focused on Rare Anaemias that included an interactive discussion of clinical cases.

November 24, 2014

ENERCA participated in the 4th Pan European Conference on Haemoglobinopathies & Rare Anaemias held in Athens last 7-9 November 2014 in Athens. This Conference was organized by TIF in collaboration with the Greek Thalassaemia Federation (EOTHA), and was held under the auspices of the Hellenic Society of Haematology and the Greek Ministry of Health.  

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Researcher, teacher and patient advocate Prof. Hermann Heimpel dies at the age of 84 years

Professor Heimpel collaborated with ENERCA for the last 10 years

October 21, 2014

Professor Hermann Heimpel, an ENERCA partner and friend, decisively shaped the University Hospital of Ulm - in research, teaching and administration. On October 7th, the former Medical Director of the Department of Internal Medicine III (1969-1996) and former Vice-Rector of Ulm University died at the age of 84 years.

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EC’s implementation report on rare diseases: Europe’s challenges and council recommendations

Considerable efforts are still required to ensure all rare disease patients are adequately cared for

October 3, 2014

The present implementation report measures both achievements and future strategies to continue improving rare disease research and treatment, as well as the quality of life of patients and their families.

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