Translate
Hydroxyurea is not as effective as transfusions in preventing recurrent strokes in children with sickle cell anemia
May 13th 2012
A previous study (STOP 1) demonstrated the efficacy of transfusion in preventing the occurrence of stroke in sickle cell anemia children. Unfortunately, it does not abolish completely the risk of recurrent strokes. There is an urgent need to find a more effective therapy to prevent recurrent strokes in sickle cell anemia. According to a recent study published in Blood, commented by Dr. Mariane de Montalembert, hydroxyurea may have some benefits in certain patients but it is not be the pursued alternative treatment.
ENERCA video about haemoglobinopathies and children
April 25th 2012
Haemoglobinopathies are inherited illnesses that can pass from parents to their children. ENERCA partners have developed a video to promote prenatal prevention of haemoglobinopathies. Its message is: Get informed!
The ENERCA White Book to be presented in Brussels in an event organized by EURORDIS
April 16th 2012
The most important ENERCA deliverable is the White Book for the creation of a European Research Network (ERN) for Rare Anaemias (RA). It will be presented at the 6th European Conference on Rare Diseases and Orphan Products, organized by EURORDIS next May 23rd 25th in Brussels (Belgium). This pivotal task of ENERCA Project is intended to be a milestone in the process of reducing patient’s health inequalities across Europe and a friendly user tool for other rare diseases ERNs.
Watch the EURORDIS "Rare but strong together event" videos
March 28th 2012
On February 29th EURORDIS celebrated the Rare Disease Day, a global event that included participation from 56 countries. The “Rare but strong together event” was celebrated in Brussels, with the participation of meaningful voices in the field of rare diseases. The videos from this interesting event are now available Online, including a presentation about ENERCA.
World Thalassaemia Day May 8th: Patient’s rights revisited
March 27th 2012
Join Thalassaemia International Federation (TIF) on this 8th of May theme: “Patients Rights _ Revisited” and organise events, workshops, discussions, print educational material, investigate and write to TIF how patients’ rights are protected in your country or region.
Agenda
XXVth International Symposium on Technological Innovations in Laboratory Hematology (ISLH)
May 21st - 24th 2012
Nice, France
International Society For Laboratory Hematology (ISLH)
6th European Conference on Rare Diseases and Orphan Products
May 23rd 2012
Brussels, Belgium
The European Conference on Rare Diseases & Orphan Products is the unique platform/forum across all rare diseases, across all European countries, bringing together all stakeholders - academics, health care professionals, industry, policy makers, patients’ representatives.
Organized by EURORDIS and co-organized by DIA Europe, with the support of European Commission, DG Health and Consumers’ Protection and AFM Téléthon.
V National Congress of the Sociedad Española de Hematología y Oncología Pediátricas
May 24th - 26th 2012
Pamplona, Spain
Sociedad Española de Hematología y Oncología Pediátricas
2nd Meeting of the Rare Diseases in Adults Group. Therapeutic issues.
May 25th 2012
Barcelona (Spain)
It is a free activity, although reservation is needed (preferably before May 11th).
Grupo de Trabajo de Enfermedades Minoritarias del Adulto and Hospital Clínic, Barcelona-CIBERER
Copyright © 2002 - 2012 Enerca
Enerca is a project in the Health Programme 2008 of the European Commission.