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Haemoglobinopathies on the Move: Is Europe ready?

A spotlight on the different policies and practices of ten EU countries

February 10, 2014

A detailed report concludes that, despite the improvements reached, a tailored, comprehensive, holistic approach to haemoglobinopathies is not equally applied across the EU members. The document was developed by a group of experts from ENERCA and TIF, in collaboration with the International Organization for Migration (IOM) and sponsored by Novartis Farma.

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Half a Score: A video from EPIRARE about rare diseases

Registry initiatives on rare diseases are urgent

February 6, 2014

EPIRARE (European Platform for Rare Disease Registries) encourages the adoption of the EU Council Recommendation on rare diseases (2009/872/CE), which recommends support of registers and databases for epidemiolocial purpose. Keep on reading to view an interesting video with interviews to explain the urgency of building new registry initiatives in rare diseases.

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Horizon 2020 is here to stay

The Work Programme "Health, demographic change and wellbeing" includes funding for European Reference Networks

December 20 2013

Horizon 2020, presented a few days ago, aims to address the needs of specific population groups, including those suffering from rare diseases, and ensure access to effective and competent health and care systems. It  is a new chance to create an environment to fight rare diseases more efficiently.

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Read the presentations of the 5th European Symposium on Rare Anaemias

The Symposium was completed with the 1st Italian Thalassaemia meeting for patients

December 15, 2013

The 5th European Symposium on Rare Anaemias joined in Ferrara (Italy) 200 attendants, including patients and experts. Now you can access most of the presentations through the ENERCA website. The event, celebrated in November 15th – 16th, is an activity to disseminate up-to-date knowledge on rare anaemias and, at the same time, increase their awareness. Its organizers were the European Network for Rare and Congenital Anaemias (ENERCA); the Italian Federation of Associations for Thalassaemia and Sickle Cell Disease (UNITED); and, the Thalassaemia International Federation (TIF).

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New Document: ENERCA Recommendations for Sickle Cell Disorders - Haemoglobinopathies

November 29, 2013

The ENERCA experts have published a consensus document with recommendations for a better management of Sickle Cell Disorders and Haemoglobinopathies. The ENERCA recommendations are oriented to medical staff expert as well as non-experts in the field, offering objective and reliable information for the management of these diseases. The elaboration of such document has been coordinated by Dr.Béatrice Gulbis within the ENERCA3 WorkPackage 4.

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Download the presentations of the I Spanish National Congress on Rare Anaemias

Learn about the latest advances in the diagnosis, management, prevention and treatment of rare anaemias

November 27, 2013

The latest advances in the diagnosis of hemoglobinopathies and other rare anemias, the clinical management of severe hemoglobinopathies, as well as all aspects related to the prevention and treatment of rare anaemias, met recently in Barcelona (Catalonia, Spain). Now you can download the presentations from the I Spanish National Congress on Rare Anaemias and Related Syndromes at the Training section of the ENERCA website.

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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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