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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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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.

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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.

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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.

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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.

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“Living with Thalassaemia”: a video challenge from TIF

Share your story of positivity, strength, treatment, support and success in a short video

July 4, 2017

The video challenge invites people living with thalassaemia to share their story in a short video. Thalassaemia International Federation (TIF) asks for stories of positivity, strength, treatment, support and success. 

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Join us at the next ESH-ENERCA Training Course on Haemoglobin Disorders

On January 23-24 ENERCA and ESH will join their efforts in Barcelona to tackle rare anaemias.

June 27, 2014

Continuing Continuoing medical education is a key tool in the fight to raise awareness  of rare anaemias. For this reason ENERCA has established d a close partnership with the European School of Haematology (ESH). The next ESH-ENERCA - Training Course on Haemoglobin Disorders will be held in Barcelona on January 23-24, 2015.

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EUCERD Joint Action Workshop Report: Orpha codes in Health Information Systems

A new version of the International Classification of Diseases is being curated with the participation of Orphanet

June 20, 2014

It is necessary to share a common language code when recording, describing and discussing scientific achievements. The fact that nowadays rare diseases are not properly covered in coding standards adds another difficulty to the fight against rare diseases.

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New ENERCA Flyer

An invitation to visit our website and interact with it

May 30, 2014

ENERCA is evolving. Today it is engaged in the design of e-Health tools to ensure the same level of access to rare anaemias services across Europe.

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