Community Programme Action for Community Programme Action for Rare Diseases Rare Diseases
1st phase: 2002-2004 (ENERCA 1)1st phase: 2002-2004 (ENERCA 1)2nd phase 2005-2008 (ENERCA 2)2nd phase 2005-2008 (ENERCA 2)3rd phase 2009-2012 (ENERCA 3) 3rd phase 2009-2012 (ENERCA 3)
EEuropean uropean NeNetwork for twork for RRare and are and CCongenital ongenital AAnaemiasnaemias
10 Partners
European Network for Rare Congenital Anaemias
Belgium (1)France (1)Germany (1)Italy (2)Portugal (1)Spain (2)Sweden(1) UK (1)
ENERCA 1 (2002-2004)
ENERCA 2 (2005-2008)
12 Partners
European Network for Rare and Congenital Anaemias
Belgium (1)Cyprus (1)France (1)Germany (2)Italy (4)Portugal (1)Spain (2)
ENERCA 3 (2009-2012)
48 partners 24 Beneficiaries + 24 Collaborating
European Reference Network of Expert Centres in Rare Anaemias
WHO
Belgium (2)Czech Rep (1)Cyprus (3)Greece (2)France (7)Germany (4)Holland (2)Italy (10)Poland (1)Portugal (1)Romania (2)Serbia (3)Spain (4)UK (5)
TIFTHALASSEMIA INTERNATIONAL FEDERATION
WP1
WP2
WP3
WP4WP5
WP6
NETWORK
EPIDEMIO LOGY
AWARENESS
RESEARCH
TRAINING
HARMONIZATION
ENERCA WORKPACKAGES
RESEARCH
Identification of expert centres
Promotion of collaboration to complete the epidemiological registry
Provision of guidelines for diagnosis and clinical management of patients
WP1
WP2
WP3
WP4
WP5
WP6
EUROPEAN TRAINING ACTIVITIES
ENERCA HELP-LINE FOR PATIENTS
15 per year(50%)
EPIDEMIOLOGY OF RARE ANAEMIAS IN EUROPE
Haemoglobinopathies and ThalassemiasFanconi Anaemia (F)Blackfan-Diamond Anaemia BDA)Congenital Dyserythropoietic Anaemias (CDA)Paroysmal Nocturnal Haemoglobunuria (PNH)
EPIDEMIOLOGY OF RARE ANAEMIAS IN EUROPE
Comics about ANAEMIA
Sickle Cell DiseaseAdventure
Transfussion.The travel of the blood
Thalassaemia Adventure
EC Pilot Reference Network
for Rare Anaemias
Head of Project - J.L. Vives Corrons [email protected] Project Manager - María del Mar Mañú Pereira [email protected] Assistant - Laura Olaya Costa [email protected]
Red Cell Pathology UnitHospital Clinic i ProvincialUniversity of Barcelonac/ Villarroel 170080036-BarcelonaPhone: +34 934515950Fax: +34 [email protected]
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