Education & training on rare anaemias: how to improve them? Patricia Aguilar Martinez CHU de Montpellier, FRANCE ENERCA
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1 Education & training on rare anaemias: how to improve them? Patricia Aguilar Martinez CHU de Montpellier, FRANCE ENERCA
2 Education & training on rare anaemias Past and present
3 Medical education on rare anaemias : available tools Books, printed material Courses, conferences, training CDs, Websites, e-learning
4 Web-based based educational resources Easy, Quick access Relatively cheap Available everywhere To anybody Huge number of webpages Most are in English Quality of the information?
5 Accessed on Oct 2nd
6 How can we improve education and training on rare anaemias? The role of ENERCA
7 ENERCA and education on rare anaemias Network of professionals and patient s associations Annual symposium Website ENERCA3 : workpackage on Education & Training
8 ENERCA and education on rare anaemias Network of professionals and patient s associations Annual symposium Website : ENERCA3 : workpackage on Education & Training
9 The ENERCA website
10 Patients Professionals
11
12 Automatic translation
13 ENERCA and education on rare anaemias Network of professionals and patient s associations Annual symposium Website ENERCA3 : Workpackage on Education & Training (WP3)
14 How can we improve education and training on rare anaemias? ENERCA3 WP on education & training
15 Medical education on rare anaemias 1. Define the public 2. Describe the goals 3. Find the adequate tools
16 Medical education on rare anemias : to whom? For doctors For patients and the public
17 Medical education on rare anemias : goals? To provide better knowledge To help doctors diagnose them Better care for patients
18 WP on education & training : -1- collaborations 1- Health professionals (doctors) in collaboration with : European School of Haematology (ESH( ESH) European Haematology Association (EHA( EHA) World Health Organization (WHO( WHO) National haematology or paediatric Societies and expert centres 3
19 1 - European School of Haematology (ESH) Training courses, conferences Website : Publications ESH Handbook on Disorders of Erythropoiesis, Erythrocytes and Iron Metabolism (2009) Webcasts of ESH-ENERCA Training Courses Partnerships : EHA, ENERCA
20 2 - European Haematology Association (EHA) Annual congress Website : Working group on red cell disorders Participation of ENERCA partners : members, president: Pr MD Capellini
21 3 - WHO ENERCA partner (Dr V. Boulyjenkov) WHO resolutions on : Thalassemia (2006) Sickle cell disease ( ) Birth defects (2010) Website: 6 official languages (Arabic, Chinese, English, French, Russian, Spanish) Numerous publications freely available
22 WP on education & training : collaborations 2- Patients & families (public) in collaboration with : Thalassaemia International Federation (TIF) 3
23 ENERCA3 : Education & Training : -2- achievements 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, Portugal, France) Cartoon on prevention of haemoglobinopathies patients and general practitioners
24 ESH-EHA EHA-ENERCA ENERCA training course st ENERCA3 training course Innovative therapies on red cell and iron disorders
25 2011 ESH-ENERCA-TIF 2 nd ENERCA3 training course 170 participants 29 countries
26 2012 ESH-ENERCA-CGRF 3 rd ENERCA3 training course 145 participants 23 countries
27 WP3 tasks 3 Task 3. Video with prevention messages about haemoglobin disorders. Leticia Ribeiro (Coimbra, Portugal) For patients, families, the public, and family doctors Cartoon translated in Portuguese, English, French, Spanish and Italian.
28 Task 3 : video
29 Future developments On education & training on rare anaemias
30 ENERCA : future on E & T Collaboration with HEMATimage (Pr J Corberand) The e-enerca-education project an interactive platform dedicated to e-learning on the diagnosis of rare anemias CHU de Montpellier (University Montpellier 1)
31 Conclusions & perspectives Reinforcement of the European networking to avoid duplications Translation in more European languages Development of e-learning : e-enerca
32 WP3 : partners 3 CHU (Montpellier) S Cunat, M. Giansily Blaizot, C Bret, S Tondeur, Coordinator : P Aguilar Martinez Associated partners: ESH (Paris) D Jasmin, E Gluckman KINGS (London) SL Thein CHC (Coimbra) L Ribeiro Collaborating partners: WHO (Geneva) V Boulyjenkov IUH (Paris) Y Beuzard BRF (Athens) D Loukopoulos UMFVB M Serban
1. Define the public. 2. Describe the goals. 3. Find the adequate tools
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(*Next Generation Sequencing) Patricia Aguilar Martinez, MD, PhD CHU de Montpellier, FRANCE & ENERCA WP leader 6 th European Symposium on Rare Anaemias-1 st Dutch-Belgian meeting for patients and health
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