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First Rare Barometer Voices survey on the impact of rare diseases on daily life

The survey is the first to be launched under Rare Barometer Voices EURORDIS initiative

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!

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eENERCA Closing Meeting - 2nd September, block your agenda and join us!

The Closing Meeting will join ENERCA partners to present the e-platforms and the potential recognition of the ERN in Rare Hematological Diseases

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.

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New Master in advanced medical skills - Rare Anaemias and related disorders

The master deals with the basic aspects of the pathology of erythropoiesis with clinical manifestations of anaemia due to failure of the bone marrow and/or red blood cell

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.

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Check the webcasts of ESH-ENERCA Training Course on Diagnosis and Management of Very Rare Red Cell and Iron Disorders!

Watch the presentations of the last training course on iPhone/iPad/Android devices with "TALKS on the GO™" App or ESH eLearning!

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.

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ENERCA Telemedicine platform is already available!

Telemedicine platform facilitates remote diagnosis orientation of complex cases by building a bridge among health professionals in distant locations and experts in rare anaemias

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.

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European Patient Advocacy Group patient representatives have been announced

EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation in the decision-making processes around European Reference Networks (ERNs).

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.

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The FDA designates “lentiviral vector containing human liver and erythroid pyruvate kinase (PKLR) gene” as new Orphan Drug for the PKD treatment

The orphan drugs designation by the FDA, together with the one achieved by the European Medicines Agency in 2014, will allow promoters to get benefits for the development of this lentiviral vector to facilitate the approval for its commercialization

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.

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ThalCare tool for the management of patients with thalassaemia

The tool assists medical and nursing teams enabling the centers to collaborate with multidisciplinary experts on-line

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.

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ENERCA e-Learning platform is already available!

To access to the e-Learning platform you only have to freely register, learn with us!

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!  

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Register for Rare Barometer Voices: Make your voice heard!

Rare Barometer Voices is part of the new EURORDIS initiative, the Rare Barometer Programme.

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.

Read more about "Register for Rare Barometer Voices: Make your voice heard!"

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