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.
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.
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.
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.
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.
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.
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.
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.
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.
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.