ࡱ> >@=%` \bjbjNN 4.,,\ \ . . . . . "$$$$$$$?hH H. . ]6. . "". " up T.,s0S"SSt dm k7 HH D Training course on standards of care of spinal muscular atrophy (SMA) and Duchenne muscular dystrophy (DMD) Satellite meeting of the TREAT-NMD Governing Board meeting (February 4-5, 2009, Budapest - Hungary) Meeting starts after closing of the Governing Board meeting on 4th February and ends on 5th February Scientific programme Lectures will last for 30 minutes followed by 10 minutes of discussion 4th February Opening of the Training Course Professor Kate Bushby 15:00-15:40 Volker Straub: Networking for neuromuscular disorders for clinicians Professor of Neuromuscular Genetics, Newcastle University, joint coordinator ofthe TREAT-NMD network 15:40-16:20 Kate Bushby: Diagnosis and standards of care in DMD Professor of Neuromuscular Genetics, Newcastle University, joint coordinator of the TREAT-NMD network 16:20-17:00 Thomas Sejersen: Outcome measures and assessment tools in neuromuscular disorders. Clinical trials on DMD Associate Professor of Neurology, Karolinska University Hospital, Stockholm 17:00-17.40 Enrico Bertini: Genetic background, standards of care and clinical trials in SMA Neurologist, Unit of Molecular Medicine, Dept. of Laboratory Medicine, Ospedale Bambino, Rome Dinner 5th February 9:00-9:40 Hanns Lochmller: Patient registries in DMD and SMA, global registries Professor of Experimental Myology, Newcastle University 9:40-10:20 Ria Broekgarden: Neuromuscular disorders and respiratory care in the Netherlands VSN - Dutch NMD Organisation, ENMC chair 10:20-11.00 Herv Laouenan: Reference centre from concept to reality - A history of rare disease plans and initiation of reference centre model for gold standard implementation of care, registry to facilitate involvement in clinical trials. 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