Dans les Pas de Lou

Purpose of the association

To raise awareness of and support people living with the genetic condition ‘Shinawi-Desanto’ and their families, by promoting their integration into society, whether in social, sporting, educational or professional contexts; to promote inclusion and the recognition of disability – particularly invisible disability – within the national education system and in society by raising awareness amongst educational and teaching staff, by encouraging the implementation of appropriate measures, and by supporting Lou and other children in their participation in all school activities (field trips, sport, workshops, etc.); to facilitate access to appropriate healthcare, in particular by organising remote consultations with healthcare professionals for families who do not have access to various therapies; to collect data on ‘Shinawi-Desanto’ disease, an extremely rare genetic condition; to assist parents in compiling applications for support, whilst encouraging exchanges between parents; to provide administrative support and help with planning the life pathways of those affected; to support and carry out initiatives to improve the quality of life of our

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