September 16, 2015
With the aim of increasing public awareness about this very rare disease, several activities will take place around the world. Spanish Association for aHUS (ASHUA) will be one of the coordinator in this International Day.
August 31, 2015
Professor Joel Corberand, dedicated to vocational education by e-learning in Laboratory Medicine in the Laboratory of Hematology in Centre Hospitalier Universitaire (CHU) of Toulouse, passed away last August 14th at the age of 72 years. From ENERCA we would like to express our most sincere condolences to his family, friends and loved ones.
August 25, 2015
The report entitled: “ENERCA: The European Network for Patients with Rare Anaemias.” and developed by Prof. Joan Lluis Vives Corrons and Dr. Maria del Mar Mañú, presents the main contribution of the network to the field of Rare Anaemias as well as the Health Services provided in the last decade.
August 11, 2015
This edition has been established by H. H. Sheikh Sultan Bin Khalifa Al Nahyan Humanitarian & Scientific Foundation in collaboration with ENERCA partner, Thalassemia International Federation (TIF), and includes three categories: International Awards, Arab Awards and National Awards.
July 30, 2015
Last 1-2 July ENERCA was present in the workshop “Realising European Reference Networks for Rare Diseases: a preparatory workshop for the RD field”, held in Brussels by EUCERD.
July 14, 2015
Getting as many signatures as possible is essential to support the nomination of 2019 as the European Year for Rare Diseases! Be part of the European rare disease movement and help to ensure rare diseases a continuous public health priority. Make a difference!
June 15, 2015
6th European Symposium on Rare Anaemias - 1st Dutch-Belgian meeting for patients and health professionals will be held in Amsterdam (The Netherlands) next 21st and 22nd November 2015. Inscriptions are already opened! We are willing to see you this November in Amsterdam!
June 12, 2015
Orphanet has recently published “Rare disease Registries in Europe”, an updated document that collects all the information regarding specific rare disease or group of diseases in the European Union or other participants in the consortium Orphanet countries. A pan-European interoperable electronic Registry for major Rare Anaemias and other epidemiological health records is currently being developed by ENERCA.
June 3, 2015
This prestigious prize rewards TIF's outstanding worldwide contribution to public health, ensuring equal access to quality health care for every patient with thalassaemia and other haemoglobin disorders across the world since its establishment in 1987.
May 8, 2015
As every year, Thalassaemia International Federation (TIF) celebrates these special day focusing on different topics. 2015 is the year of "Enhancing partnership towards patient-centred health systems: good health adds life to years!" aiming to achieve a change in healthcare system by becoming more patient-centred.