1. Define the public. 2. Describe the goals. 3. Find the adequate tools
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1 Educational resources on rare anaemias in Europe : the role of ENERCA Dr Patricia Aguilar-Martinez, France
2 Did you say Education? Medical education on rare anaemias 1. Define the public 2. Describe the goals 3. Find the adequate tools
3 Medical education on rare anemias : to o whom? For doctors For patients and the public Medical education on rare anemias : goals? To learn more on rare anemias To help doctors diagnose them Better care for patients
4 Medical education on rare anaemias : how? Books, printed material Courses, conferences, training CDs, Websites, e-learning Course, conference Friendly (direct contact) Interactive Cost& Time Speakers Rooms Availability and update
5 Web-based based educational resources Easy, Quick access Relatively cheap Available everywhere Huge number of webpages Most are in English Quality of the information? Search for «anaemia» (Google) Wikipedia Websites from pharmaceutical companies
6 Medical education on rare anaemias : for doctors Universities i i (official i teaching websites) Scientific societies (European, national) Specialized organizations (ESH) WHO website European project (ENERCA) Medical education on rare anaemias : for patients Patient-parent s associations TIF (thalassaemia) WHO website European websites (ENERCA)
7 ENERCA and education on rare anaemias
8 ENERCA and rare anaemias Network of professionals and patient s associations Annual symposium (4 th ) Website ENERCA3: workpackage on Education and Training ENERCA and rare anaemias Network of professionals and patient s associations Annual symposium (4 th ) Website : ENERCA3: workpackage on Education and Training
9 The ENERCA website Patients Professionals
10 Automatic translation
11 ENERCA and rare anemias Network of professionals and patient s associations Website Annual symposium (4 th ) ENERCA3: workpackage on Education and Training Education & training : Objectives 1- Education for health professionals (doctors) incollaboration with : ESH (European School of Haematology) EHA (European Haematology Association) WHO (World Health Organization) national haematology or paediatric Societies and expert centres electronic educational material. 3
12 Education & training : Objectives 2- Education for : patients & families (public) ENERCA website in collaboration with : TIF (Thalassemia International Federation) electronic educational material. 3 ENERCA3 : Education & Training 3 European training courses on rare anaemias Material available on the ESH and ENERCA website Postcast (slides and talk) on courses 2 and 3 3 national courses (UK, France, Portugal) Cartoon on prevention of haemoglobinopathies (patients and general practitioners)
13 Educational resources in Europe Rare and congenital anaemias The ENERCA3 network ENERCA partners and collaborations EHA (European Haematology Association) ESH (European School of Haematology) WHO (World Health Organization)
14 1 - European Haematology Association (EHA) Annual congress Website : Working group on red cell disorders Participation of ENERCA partners (members, president) Maria Domenica Capellini 2 - European School of Haematology (ESH) Training courses, conferences Website : Publications : ESH Handbook on Disorders of Erythropoiesis, Erythrocytes and Iron Metabolism (2009) Webcasts of ESH conferences : ESH-ENERCA Training Course: HAEMOGLOBIN DISORDERS: Laboratory Diagnosis and Clinical Management April 01 - April 02, Brussels, Belgium Partnerships : EHA, ENERCA
15 2 - European School of Haematology (ESH) Training courses, conferences Website : Publications : ESH Handbook on Disorders of Erythropoiesis, Erythrocytes and Iron Metabolism (2009) Webcasts of ESH conferences : ESH-ENERCA Training Course: HAEMOGLOBIN DISORDERS: Laboratory Diagnosis and Clinical Management April 01 - April 02, Brussels, Belgium Partnerships : EHA, ENERCA ESH-EHA-ENERCA ENERCA training course st ENERCA3 training course Innovative therapies on red cell and iron disorders
16 nd ENERCA3 training course 170 participants 29 countries rd ENERCA3 training course
17 3 - WHO ENERCA partner (Dr V. Boulyjenkov) WHO resolutions on : Thalassemia - sickle cell disease ( ) Birth defects (2010) Website: 6 official languages (Arabic, Chinese, English, French, Russian, Spanish) Numerous publications freely available WHO library website
18 WHO library resources Anemia Books Online publications ENERCA partners and collaborations EHA (European Haematology Association) ESH (European School of Haematology) WHO (World Health organization) TIF (Thalassemia International Federation) ITHANET (Thalassemia) HEMATimage
19 HEMATimage Continuing Education Programme in haematology 9 dossiers per year. Available in 8 languages (German, English, Spanish, French, Italian, Dutch, Polish and Portuguese). E-MEDECINimage ( hematimage.eu/) HEMATimage Pr. Joël X. CORBERAND Project coordinator LEONARDO DA VINCI 2009
20 National partners National patient-parent s associations National Scientific Societies Bulgarian Society of Clinical and Transfusion Haematology Conclusions & perspectives Reinforcement of networking to avoid duplications Translation in more European languages Facilitate e-learning : e-enerca
21 ENERCA3 WP3 Dimitris Loukopoulos (Athens) Leticia Ribeiro (Portugal) Swee Lay Thein (London) Didi Jasmin (ESH) Margit Serban Victor Boulyjenkov (WHO) Yves Beuzard (Paris) Patricia Aguilar Martinez (France) Thank you for your attention Благодаря ви за вниманието
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