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HRH The Princess of Asturias inaugurated the VI Spanish Congress on Rare Diseases

The aim of the conference was again to raise awareness on the situation of people with rare diseases

October 29 2013

Rare diseases patients and their families met with leading Spanish experts last October 18, 19 and 20 in Totana (Murcia, Spain). The aim of the conference was again to raise awareness on the situation of people with rare diseases, within the VI Spanish Congress on Rare Diseases, organized by the Spanish Federation for Rare Diseases (FEDER) and the Association for Rare Diseases and other severe developmental disorders (D' Genes), in collaboration with Genzyme Foundation. HRH The Princess of Asturias inaugurated the meeting.

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Strong CoMMiTMenT to research on rare anaemia

Launch of new EU-funded project on red blood cell diseases

October 22, 2014

There is a high demand for new tools for improved diagnosis and monitoring of disease progression. This is where CoMMiTMenT (Combined Molecular Microscopy for Therapy and Personalized Medication in Rare Anaemias Treatments), a new EU-funded research project, comes into play. ENERCA is an active part of the CoMMiTMenT Network.

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ENERCA will pioneer the design of e-Health tools in rare anaemias for patients and experts

The Kick-off Meeting of e-ENERCA was held on October 14th in Luxemburg

October 16 2013

After 10 years of history, e-ENERCA is not just a continuation of ENERCA 3 but a clear step forward to the consolidation of the European Reference Network of Centres of Expertise on Rare Anaemias. The Kick-off Meeting of e-ENERCA was held on October 14th in Luxemburg.

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The First Spanish Congress of Rare Anemias and Related Syndromes empowers patients and healthcare professionals

The Congress gathered around 100 people in Barcelona in September 20-21

October 12, 2013

Interaction between patients and professionals is positive, empowering both of them and underlining the influence of patients as a collective. The voices of patients must be heard to offer a more efficient response to rare diseases from the medical community.

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ENERCA enters a new era: e-ENERCA

The new phase of the project started in September 2013 and will focus on e-Health tools for rare anaemias

September 25, 2013

After three successful phases of the project, which started back in 2003, e-ENERCA will develop during the next three years modern e-Health tools for a better management and knowledge of rare anaemias.

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Results of the Public consultation on the implementation of European Reference Networks

An online survey on the potential scope of European Reference Networks and the criteria to join them

August 15, 2013

The European Commission promoted a consultation to seek the views of interested parties on the potential scope of European Reference Networks, and the criteria for healthcare providers wishing to join them. The consultation consisted of an online survey which was open for submission for 12 weeks, between November 2012 and February 2013. The results show a wide consensus in the main aspects to consider among the contributors.

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Join the 5th European Symposium on Rare Anaemias next November

The symposium will take place in Ferrara (Italy), with the 1st Italian Thalassaemia Meeting for Patients and Health Professionals

August 2, 2013

ENERCA, the Italian Federation of Associations for Thalassaemia and Sickle Cell Disease (UNITED) and the Thalassaemia International Federation (TIF) are glad to invite you to aunique chance to access up-to-date knowledge and work in a transversal environment.

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New educational publications by the Thalassaemia International Federation

TIF collaborates with ENERCA in the creation of tools such as the White Book

July 24, 2013

The Thalassaemia International Federation (TIF) works to ensure equal access to quality health care for every patient with thalassaemia and other haemoglobin disorders across the world. One of the actions to achieve it is providing educational material with concise up-to date information on all aspects of thalassaemia. 

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Executive Summary of the 8th Meeting of the EUCERD now online

A number of key topics were presented and discussed

July 8 2013

The 8th Meeting of the European Union Committee of Experts on Rare Diseases (EUCERD) was held  on the 5-6 June 2013 in Luxembourg and marked the last meeting of the current mandate.

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EPIRARE workshops to empower professionals to design and manage a rare disease registry

Two interesting offers for next September and October

July 1 2013

EPIRARE (European Platform for Rare Disease Registries) is a three-year project co-funded by the European Commission. One of its lines of activity is the organizations of courses and workshops to empower professionals to design and manage a rare disease registry.

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