July 18, 2014
The conference, held on 23rd June 2014 in Brussels, aimed to discuss the organisation of specialised networks across the EU and examine the next steps of the deployment process, in preparation of the forthcoming call for European Reference Networks in the fourth quarter of 2015.
July 15, 2014
ENERCA provides in Orphanet Journal of Rare Diseases an overview of policies in 10 European countries. In countries with existing standards of care and where management guidelines have been implemented and well adhered to by patients, the rate of survival and quality of life has significantly increased.
July 13, 2014
The development of specialised services for rare congenital anaemias cannot progress without epidemiological information being made available to health authorities. The purpose of this survey is limited to identifying the existing registries so that the possibility of further collaboration between them can be explored.
July 4, 2017
The video challenge invites people living with thalassaemia to share their story in a short video. Thalassaemia International Federation (TIF) asks for stories of positivity, strength, treatment, support and success.
June 27, 2014
Continuing Continuoing medical education is a key tool in the fight to raise awareness of rare anaemias. For this reason ENERCA has established d a close partnership with the European School of Haematology (ESH). The next ESH-ENERCA - Training Course on Haemoglobin Disorders will be held in Barcelona on January 23-24, 2015.
June 20, 2014
It is necessary to share a common language code when recording, describing and discussing scientific achievements. The fact that nowadays rare diseases are not properly covered in coding standards adds another difficulty to the fight against rare diseases.
May 30, 2014
ENERCA is evolving. Today it is engaged in the design of e-Health tools to ensure the same level of access to rare anaemias services across Europe.
May 22, 2014
The Deput Head of Unit Personalised Medicine at European Commission offered a presentation to summarize the Grant frameworks for rare diseases available in Europe. Watch the talk offered last March during the Worldwide Orphan Medicinal Designation Workshop held in London.
May 18, 2014
Every year for the International Thalassaemia Day, on the 8th of May, Thalassaemia International Federation (TIF) honours this day through different activities. All of them aim to promote awareness and education around the world in 117 member associations of TIF in 56 countries.
April 2, 2014
The coordinator of ENERCA, Prof. Joan Lluís Vives Corrons, was invited to explain the organization model designed for the fourth phase of the project, e-ENERCA. The debate celebrated in Brussels last March 25 2014 focused on IT tools and networking elements.