Registries benefits are not only directed healthcare providers, but also to patients since they can become an essential tool to provide with valuable sources of information on their disease. In the context of ENERCA e-Registry platform, a couple of simple interective scenarios based tutorials for demonstration purposes have been created with the objective of guiding patients users in the exploration of useful medical information about thalassemia a and b.
January, 2016. This training course organized by ESH and ENERCA aims to promote harmonization of procedures for clinical and laboratory diagnosis, management and treatment of both, patients with rare red blood cell disorders and patients with rare disorders of iron metabolism.
November, 2015. ENERCA, led by CLINIC, UMCU and ERASME, with the support of OSCAR, ASBL, HematosLife, PKD Support Group and TIF, organized the 6th European Symposium on Rare Anaemias-1st Dutch-Belgian meeting for Patients and health Professionals. Read the presentations and summaries of the multiple converging lectures and gather up to date knowledge on the field of rare anaemias
January, 2015. This training course organized by ESH and ENERCA, aims to promote informal interaction and ample discussion between scientists and clinicians working in the field. The current state of the art in basic and clinical research as well as the many exciting developments and future perspectives were presented by multiple international authorities.
The ENERCA White Book intends to contribute to the creation of a European Reference Network in Rare Anaemias by preparation of the recommendations and the definition of the criteria that Centres of Expertise, local centres and their interrelations have to fulfil as healthcare providers.
Investigators involved in groundbreaking researches present their findings
February, 2014. In this ESH webcast, investigators involved in groundbreaking studies about treatment regimens to reduce iron overload present their research findings and discuss the implications of their work for clinical practice.
A report to understand the situation of haemoglobinopathies in Europe
February, 2014. The European Union has made remarkable progress in the area of rare diseases, but there is still much pending work. The present document analyses the situation country by country, presenting a specific fact sheet for each European country. This report was developed by a group of experts from ENERCA and the TIF, in collaboration with the International Organization for Migration (IOM) and sponsored by Novartis Farma through in-kind support services from Burson-Marsteller Brussels.
1st Italian Thalassaemia Meeting for Patients and Health Professionals
November, 2013. ENERCA, the Italian Federation of Associations for Thalassaemia and Sickle Cell Disease (UNITED) and the Thalassaemia International Federation (TIF) organized the 5th European Symposium on Rare Anaemias and 1st Italian Thalassaemia Meeting for Patients and Health Professionals. Read the Presentations of this a unique chance to access up-to-date knowledge and work in a transversal environment.
A collaborative effort within the ENERCA3 WorkPackage 4 led by Dr. Béatrice Gulbis
November, 2013. The objective of this document is not to duplicate existing guidelines but to collect from the ENERCA partners the guidelines already available and produce a review recommendation compiling all the expertise in the field.
The Spanish National Congress for rare anaemias and other syndromes
September, 2013. Download the Congress presentations (in Spanish) addresing 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 such as iron overload and management of chelating agents, the use of drugs or gene expression biological modifiers, and stem cell transplantation.
A Programme led by the European School of Haematology (ESH)
September, 2013. An activity designed for haematologists, medical oncologists, haematology-oncology specialists, and other healthcare professionals involved in the screening, evaluation, treatment, and management of adults and children with iron overload, resulting from the spectrum of chronic iron overload diseases.
Download all the presentations of the ENERCA Sessions
Ocober, 2012.On addition of being among the organizers of the 3rd Pan-European Conference, ENERCA was on the center of attention during two dedicated sessions.
Watch online all the presentations of the ESH-ENERCA Conference
February, 2012.This course, jointly organized by ESH and ENERCA, aims at promoting harmonization of procedures for clinical and biological diagnosis, as well as management and follow-up of patients with very rare red cell disorders.
Insights on the diagnosis of hemoglobin disorders
November, 2011. The 2nd European Hemoglobinopathy Forum, organized by Bio-Radis, is a discussion forum about state of the art of hemoglobinopathies in Europe.
1st Spanish Thalassaemia Meeting For Patients And Health Professionals
November, 2011. The 4th European Symposium on Rare Anaemias is an activity of the ENERCA project which aims to inform colleagues and stimulate interest on the subject of congenital and rare anaemias which constitutes today a health care concern of significant proportions.
14th TIF International Conference for Patients and Parents
May, 2011. More than 1300 participants from over 50 countries, across 5 continents gathered in Antalya (Turkey) to witness the most successful conference on thalassaemia and the haemoglobinopathies by far organised by the Thalassaemia International Federation until now.
ESH-Enerca training course in association with Thalassaemia International Federation
April, 2011. Sickle cell disease, thalassaemia and other haemoglobin disorders are among the most frequent inherited pathologies worldwide, but until relatively recently they were considered to be rare red cell disorders in European countries.
The Medical Virtual University of Monaco (UMVM)
This continuous course is intended to act as an educational tool for health care personnel who have many responsibilities, limited resources but are still facing a large number of patients.
1st Spanish Thalassaemia Meeting For Patients And Health Professionals
November, 2010. The 3rd European Symposium on Rare Anaemias is an activity of the ENERCA project which aims to inform colleagues and stimulate interest on the subject of congenital and rare anaemias which constitutes today a health care concern of significant proportions.
ESH-EHA Course in association with Enerca
April, 2010. The EHA-ESH Scientific Workshop “Innovative Therapies for red cell and iron related disorders” organized in collaboration with ENERCA took place in Cascais, Portugal, April 16-18, 2010. The aim of the workshop was to discuss recent and original data that may result in new therapeutic strategies for red cell and iron metabolism disorders.