The place and role of the civil sector in the inclusive education and development of children with Williams syndrome (also) through music

Abstract

Williams syndrome (WS) is an extremely rare genetic disorder. Approximately 1 in every 20 000 people has WS. Because of this, most people have never even met a child with WS. WS occupies a unique place among genetic disorders because of the fact that, in addition to a unique mix of difficulties, symptoms and abnormalities, some of their abilities and performance in certain intellectual areas are adequate or average, and in many cases above average. Relatively high level of ability includes good communication skills, outstanding verbal skills, sociability and good musical abilities with highly sensitive hearing, good musical pitch and musicality, and a very positive attitude towards music. As is typically the case for rare disorders, the most important pillar of their advocacy is the civil sphere, where NGOs and foundations support WS children and families. The great affinity and positive relationship with music justifies that a prominent part of development and inclusion are specifically music-related activities, music therapy activities. The main objective of our research is to map NGOs in Europe and beyond whose activities focus on WS patients and their families. The basis for mapping the organizations is to summarize their aims, activities and achievements and to highlight their music-related activities in line with the mission of inclusion. Our main objective is to show that the development and rehabilitation of WS patients through music and musical activities is a significant and integral part of their care within the organized framework and possibilities of the civil sector.