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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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Irene Norstedt talks about rare disease’s grant situation in Europe and IRDiRC

Watch online the Deput Head of Unit Personalised Medicine at European Commission

May 22, 2014

The Deput Head of Unit Personalised Medicine at European Commission offered a presentation to summarize the Grant frameworks for rare diseases available in Europe. Watch the talk offered last March during the Worldwide Orphan Medicinal Designation Workshop held in London.

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TIF honoured the International Thalassaemia Day

This year’s theme was: “Economic Recession: Observe – Join forces – Safeguard Health”

May 18, 2014

Every year for the International Thalassaemia Day, on the 8th of May, Thalassaemia International Federation (TIF) honours this day through different activities. All of them aim to promote awareness and education around the world in 117 member associations of TIF in 56 countries.

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ENERCA participates in a Workshop on European Reference Networks

ENERCA was selected as an example of network to share its current tools and experiences

April 2, 2014

The coordinator of ENERCA, Prof. Joan Lluís Vives Corrons, was invited to explain the organization model designed for the fourth phase of the project, e-ENERCA. The debate celebrated in Brussels last March 25 2014 focused on IT tools and networking elements.

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