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  1. 1. nEUroped REGISTER TO JOIN THE NEUROPED EXTENDED NETWORK MEETING 21, 22 and 23 November 2010 in Brussels, Belgium nEUroped is for children with rare nervous system disorders with paroxysmal manifestations: Alternating Hemiplegia of Childhood; Narcolepsy; Rare surgically treatable epileptic disorders : Sturge-Weber; Hypothalamic hamartomas; Landau-Kleffner; Cerebellar Hamartomas; Rasmussen syndrome The nEUroped Working Party is pleased to invite you to take part to the Extended Network Meeting (ENM). ENM is the result of a three-year European Commission project nEUroped focused on the development of a network of patients, clinicians, and researchers addressing rare paediatric neurological diseases. ENM Objectives: • presenting the nEUroped Projects work and accomplishments; • developing the nEUroped Project toward the future with regard to its work, organization, sustainability, and extension and cooperation with other networks; • bringing together the nEUroped network members to review their accomplishments and work toward the establishment of a consortium; • to educate patients regarding the work of nEUroped and its eventual contribution to their needs and interests; • to bring together clinicians and researchers in rare neurological paediatric disorders, particularly in AHC, narcolepsy, and RSTES; • to bring in sponsors and funders of health research in order to see how they might benefit from, and contribute to, the nEUroped project and registry; • to examine the nEUroped guidelines, standards, and training programme based on the results of the surveys and consultations;
  2. 2. nEUroped • to look at core questions with regard to cooperation within the network and between nEUroped and other networks; • to promote the continual development of nEUroped within the European Commission and other European health agencies; and • to achieve a strong foundation for the future development of the nEUroped consortium within the European framework for research and health in rare diseases. ENM Format: • Preliminary Workshop, Sunday, 21 November, focuses on the roles of patients and clinicians in nEUroped and how nEUroped can be further developed to meet patient needs and interests in addressing rare paediatric neurological disease. • Day 1, Monday, 22 November, focuses on the core work carried out by nEUroped on European guidance for specific paediatric neurological diseases as well as best practices and training for the use of patient registries in a consortium of patients, clinicians, researchers, and supporting partners. • Day 2, Tuesday, 23 November, focuses on the futher development and extension of nEUroped as a consortium operating beyond the initial impetus and support of the European Commisssion. ENM Working Party Alexis Arzimanoglou Hospices Civils de Lyon, France Francis P. Crawley Good Clinical Practice Alliance – Europe (GCPA) Anna Kole European Organisation for Rare Diseases (EURORDIS) Brian Neville Institute for Child Health, University College London, UK Sona Nevsimalova 1st Medical Faculty of Charles University, Czech Republic Monique Sallaz Hospices Civils de Lyon, France Tsveta Schyns European Network for Research on Alternating Hemiplegia (ENRAH)
  3. 3. nEUroped Agenda , Registration and Practical details ENM Venue : University Foundation rue d'Egmont 11 - 1000 Bruxelles Tel : +32/(0)2/545 04 00 - Fax : +32/(0)2/513 64 11 E-mail : Agenda: Preliminary Agenda Registration: To attend the ENM, you need to Register On line or by returning the Form to no later than 14 November 2010 Accommodation: Click to directly have access to the: Hotel List Please, make your choice and reservation by latest 18 October 2010 Updated information on the ENM : For updated information on the ENM : please, visit the web site For further details on ENM, please, contact us at