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8th May: International Thalassaemia Day is here!

2015 is focused on "Enhancing partnership towards patient-centred health systems: good health adds life to years!"

May 8, 2015

As every year, Thalassaemia International Federation (TIF) celebrates these special day focusing on different topics. 2015 is the year of "Enhancing partnership towards patient-centred health systems: good health adds life to years!" aiming to achieve a change in healthcare system by becoming more patient-centred.

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European Commission designates an Orphan Drug for the pyruvate kinase deficiency treatment

Orphan designation was granted by the European Commission to CIEMAT/CIBERER/IIS-FJD for the “lentiviral vector containing the human liver and erythroid pyruvate kinase (PKLR) gene” for the treatment of pyruvate kinase deficiency

April 7, 2015

On August 2014, orphan designation was granted by the European Commission to Centro de Investigaciones Energéticas, Medioambientales y Tecnológicas-Centro de Investigación Biomédica en Red de Enfermedades Raras and Instituo de Investigación Sanitaria-Fundación Jiménez Díaz (CIEMAT/CIBERER/IIS-FJD), Spain, for the “lentiviral vector containing the human liver and erythroid pyruvate kinase (PKLR) gene” for the treatment of pyruvate kinase deficiency.

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EURORDIS Awards 2015 for Excellence in the Field of Rare Diseases

EURORDIS presented last 26th February its 2015 Awards for Excellence in the Field of Rare Diseases at Black Pearl Gala Dinner

March 18, 2015

The EURORDIS Awards recognize the contribution of patients’ associations, caregivers, volunteers, scientifics, media and companies that contribute day-by-day, hand-in-hand to reducing the impact of rare diseases on people’s lives.

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FDA supports clinical trials for the definitive cure of beta thalassaemia through genetic engineering

The FDA supports two potential definitive treatments for beta thalassaemia that stem from the companies Bluebird bio and Sangamo BioSciences

March 4, 2015

State of the art scientific researches to achieve the cure for beta thalassaemia are closer than ever to reach their goals. The U.S. Food and Drug Administration (FDA) supports two potential definitive treatments for beta thalassaemia that stem from the companies Bluebird bio and Sangamo BioSciences.

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Watch the Rare Disease Day video, February 28 is approaching!

This year, Rare Disease Day focuses on the daily lives of patients, families and caregivers who are Living with a Rare Disease under the slogan: Day-by-day, hand-in-hand

February 10, 2015

Every last day of February, Rare Disease Day takes place all over the world. Since first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people with the common objective of raising awareness about rare diseases among population, specialists and media.

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EURORDIS promotes the creation of European Reference Networks to cover every rare disease within the European Union

ENERCA is one of the pilot ERN that will apply for the recognition as an ERN for Rare Anaemias

January 23, 2015

When it comes to rare diseases, having access to experts in the field that provide specific treatments can become a real challenge. With the idea of sharing the knowledge between healthcare professionals across borders in order to have the most recent and reliable information, European Reference Networks are born.

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EUROPLAN II Conference sets the way forward in the Spanish National Strategy for Rare Diseases

The main lines of action that must be followed to improve quality of life of people with rare diseases were discussed within the Conference

December 15, 2014

“We hope that the work carried out in this EUROPLAN II Conference was helpful to transmit the urgent and essential need for rare diseases in Spain to become a social priority, creating concrete lines of action” Juan Carrión, FEDER President.

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SUBMIT A CLINICAL CASE FOR DISCUSSION DURING THE ESH-ENERCA MEETING! Deadline: DECEMBER 15th, 2014

Training Course on Haemoglobin Disorders: Laboratory Diagnostic and Clinical Management January 23-24, 2015 - Barcelona, Spain

December 10, 2014

The ESH-ENERCA course on the Laboratory Diagnosis and Clinical Management of Haemoglobin Disorders will be held in Barcelona on January 23-24, 2015.

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The ENERCA White Book - Recommendations for Centres of Expertise in Rare Anaemias

Already available in our website NOW !

December 9, 2014

ENERCA White Book is a position paper, developed as a deliverable of the ENERCA 3 project that intends to contribute to the creation of a European Reference Network in Rare Anaemias (ERN-RA) by preparation of the recommendations and, in particular, the definition of the criteria that Centres of Expertise (CoE), local centres (LC) and their interrelations have to fulfil as healthcare providers. It has been nourished by all the activities that have been performed over the past ten years within the ENERCA framework.  

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Prof. Joan Lluis Vives Corrons approaches Anaemias to population and presents ENERCA features in Catalan TV

Watch online the coordinator of ENERCA network

December 4, 2014

Prof. Joan Lluis Vives Corrons, coordinator of the ENERCA network was interviewed by the Sant Cugat Television (TV25) in order to approach anaemias to common population and present ENERCA features in the field of rare anaemias. 

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