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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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IthaGenes: an interactive database for haemoglobin variations and epidemiology

Inherited haemoglobinopathies are the most common monogenic diseases

September 30, 2014

The ITHANET Portal is a website dedicated to thalassaemia. It recently announced the publication of an article describing the IthaGenes database and the companion IthaMaps tool in the open-access journal PLoS ONE.

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A new brochure to explain ENERCA to the world

The document details the organization, activities and objectives of the ENERCA Network

August 19, 2014

Learn everything about e-ENERCA, the fourth phase of the ENERCA project, through a detailed brochure with updated information and an appealing design.

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A video to explain Paroxysmal nocturnal hemoglobinuria

The video in Spanish includes testimonials from patients and health professionals

August 14, 2014

Even though the stories shown refer to a singular disease, the fears and worries expressed by patients and families are universal to all rare diseases.

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e-MEDICINimage a continuous training initiative for Laboratory Medicine professionals

e-HEMATimage is a specific program devoted to Continuing Education in Hematology

August 11, 2014

The final objective is improving the knowledge and expertise in the fields of Haematology, Medical Mycology and Parasitology, for all biomedical laboratories, whatever their infra-structure and technical systems in place. Visit e-MEDICINimage and find new information resources.

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Open consultation on dietary reference values for folate

Interested parties are invited to submit written comments by 14 September 2014

August 7, 2014

The European Food Safety Authority (EFSA) has launched an open consultation on to gather information for the elaboration of a document to propose dietary reference values for folate for adults, infants and children, pregnant and lactating women.

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EURORDIS launches a questionnaire about difficulties accessing treatment

ENERCA encourages you to share your experience through the EURORDIS questionnaire

July 30, 2014

Results will be analysed by trained staff and communicated to national and European-level Health Authorities in order to move toward finding solutions to problems with access.

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