September 15, 2016
EURORDIS has developed the Rare Barometer Voices, a new interactive survey panel available in 23 languages that collects the experiences of people that are living with or affected by a rare disease. The first stage of the study is now open!
July 27, 2016
eENERCA project is coming to an end the upcoming month of September. On behalf of ENERCA team, we are delighted to invite you to eENERCA Closing Meeting to be held the 2nd September 2016 in Barcelona. The aim of this closing meeting is to join together all eENERCA partners in order to: Present the e-platforms and final outcomes from this fourth phase of ENERCA project and present the potential sustainability of the network with the achievement of EuroBloodNet, the proposal sent to the European Commission for the recognition as European Reference Network in Rare Hematological Diseases.
July 27, 2016
The aim of the master's degree in advanced medical skills is to provide specialized health training for medical graduates, to increase their competences in the area the rare anaemias and related conditions.
June 28th, 2016
Under the scientific direction of Patricia Aguilar Martinez, Paola Bianchi, Achille Iolascon, Richard Van Wijk, Alberto Zanella, webcats of ESH-ENERCA Training course give you the privilege of viewing these expert talks at any place (and now even on your iPhone, iPad or iPod Video), enhacing your learning experience and knowledge.
May 30, 2016
The ENERCA Telemedicine platform facilitates remote diagnosis orientation of complex cases by building a bridge among health professionals in distant locations and experts in rare anaemias leading to a faster and more accurate diagnosis and consequently, to a better care of the patient.
May 17, 2016
EURORDIS has developed ePAGs for each ERN disease grouping. ePAGs bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN decision-making processes and a democratic process of patient representation.
May 9, 2016
The Food and Drug Administration (FDA), the govern agency of United States responsible for the drugs regulations, has designated “lentiviral vector containing human liver and erythroid pyruvate kinase (PKLR) gene” as new Orphan Drug for the PKD treatment, a rare anaemia caused by mutations in the gene that codifies the pyruvate kinase enzyme, which impairs directly the metabolic energy of red cells and results in the reduced lifespan and early breakdown of erythrocytes in the blood.
April 20, 2016
ThalCare provides information and treatment assistance by tracking transfusions, chelation, vaccination and other key related issues. Moreover, ThalCare enables prevention of the disorder by cascade screening methodology and assesses the risk category for transplants indicating suitability for BMT.
April 8, 2016
The ENERCA e-Learning platform is a useful tool for initial and continuing medical education in the field of rare anaemias, offering a complete panel of training tools to the registered participants and contributing to lowering inequalities in knowledge accessibility throughout Europe. To participate you only have to freely register. Join, enjoy and learn with us!
March 22, 2016
EURORDIS, the European Organisation for Rare Diseases, has developed the Rare Barometer Voices, a new interactive survey panel available in 23 languages that collects the experiences of people that are living with or affected by a rare disease.