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The Syndrome Angelman France association is a national organisation
created by and for the families and friends of all those who have AS.
The administration of the S A F is composed of families as well as
professional people from the medical, paramedical and medico-social
The SAF functions entirely through voluntary workers.
The S A F leans towards the needs of adults, perceiving this as a neglected area. It does not neglect children’s problems but recognizes that most of the documentation easily available on genetic illnesses is child-focused.
“Angelman Syndrome. A look at a rare neurogenetic disease”, by Anne Chateau, published June 2013 by Editions L’Harmattan. prefaced by Professor Dan.
“Angelman Syndrome. AS in adult life”». by Anne Chateau and Odile Piquerez, published June 2015 by Editions L’Harmattan, prefaced by Doctor Elisabeth Zucman and Charles Gardou, sociologist.
This latter is a survey of families with young Angelman adults (at least 15 years old). A questionnaire was sent and 88 relevant answers were received. The aim was to assimilate information on the way in which AS adults function and to explore ways to improve their quality of life. Approaching adulthood involves preparation and 15 is the youngest at which this can be undertaken. It also helps professionals in institutions to better understand the development of AS children and therefore provide more effective support.
Several trends emerged from this study involving motor, cognition and communication skills, and issues concerning health, caring and institutions.
op – ac – fév 2016
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