One of the characteristics of Dravet Syndrome is the progressive impairment of gait and consequently reduced functional mobility of patients. On the long term, most patients maintain the ability to walk, but for longer distances they must rely on wheel-chair use, which further negatively affects their mobility. DSEF strongly supports the scientific research on this topic.
Dravet Italia Onlus initiated and organized a presentation about gait problems at the Third Horizons for Dravet Syndrome in Prague. Dravet Italia Onlus and Stichting Dravetsyndroom NL/VL invited two researchers from resp. Italy and Belgium: dr. Alessandra Del Felice and dr. Ann Hallemans. In their combined lecture ‘Gait analysis’ they shared their data and knowlegde on this specific field.
Following this lecture, an informal network of European experts from different disciplines has been formed, resulting in an application for European financing (COST) to facilitate a formal network for Gait research in Dravet Syndrome. The network will make it possible to gather sufficient data to truly understand the main clinical and biomechanical problems leading to pathological gait. One of the aims will be to develop best practice guidelines and protocols that can be widely implemented.
DSEF was involved in the COST-application and, if accepted, we will advise the working groups within this network from a patient perspective, and contribute to the dissemination of the results.