You are here: Home > News & Agenda > News

News

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.

Read more about "IthaGenes: an interactive database for haemoglobin variations and epidemiology"

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.

Read more about "A new brochure to explain ENERCA to the world"

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.

Read more about "A video to explain Paroxysmal nocturnal hemoglobinuria"

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.

Read more about "e-MEDICINimage a continuous training initiative for Laboratory Medicine professionals"

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.

Read more about "Open consultation on dietary reference values for folate"

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.

Read more about "EURORDIS launches a questionnaire about difficulties accessing treatment"

The ENERCA Poster presented at the ECRD 2014 conference awarded with an abstract in OJRD

July 21, 2014

The Orphanet Journal of Rare Diseases (OJRD) is an open access, online journal that encompasses all aspects of rare diseases and orphan drugs and publishes high quality reviews on specific rare diseases. The Programme Committee for the 7th European Conference on Rare Diseases & Orphan Products (ECRD 2014 Berlin) has invited ENERCA to submit an abstract to the OJDR as one of the top 20 highest scoring poster presenters of the last conference.

Read more about "The ENERCA Poster presented at the ECRD 2014 conference awarded with an abstract in OJRD"

First Conference on European Reference Networks sheds light on the future of ERNs

ENERCA participated in the meeting presentig its over 10 years of experience

July 18, 2014

The conference, held on 23rd June 2014 in Brussels, aimed to discuss the organisation of specialised networks across the EU and examine the next steps of the deployment process, in preparation of the forthcoming call for European Reference Networks in the fourth quarter of 2015.

Read more about "First Conference on European Reference Networks sheds light on the future of ERNs"

Challenges and gaps linked to haemoglobinopathies in Europe

ENERCA provides in Orphanet Journal of Rare Diseases an overview of policies in 10 European countries

July 15, 2014

ENERCA provides in Orphanet Journal of Rare Diseases an overview of policies in 10 European countries. In countries with existing standards of care and where management guidelines have been implemented and well adhered to by patients, the rate of survival and quality of life has significantly increased.

Read more about "Challenges and gaps linked to haemoglobinopathies in Europe"

e-ENERCA survey on available registries for rare anaemias

We would be grateful if you could take a few minutes to respond to this online questionnaire

July 13, 2014

The development of specialised services for rare congenital anaemias cannot progress without epidemiological information being made available to health authorities. The purpose of this survey is limited to identifying the existing registries so that the possibility of further collaboration between them can be explored.

Read more about "e-ENERCA survey on available registries for rare anaemias"

Copyright © 2002 - 2017 Enerca

Co-funded by the Health Programme of the European Union.