Syndrome Angelman France

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LOGO ANGELMAN-quadri transThe  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

world.

                                                                                   The SAF functions entirely through voluntary workers.

What does the S.A.F. Association propose ?

  • It enhances the expertise of parents by organizing and facilitating the dissemination of information and by sharing experience. This is why a web magazine has been created and managed – www.syndromeangelman-france.fr. This site is already interactive and cooperative, and provides a regular and consistent link with families spread over five continents. The site is shortly to be redesigned and enhanced.
  • It is a resource centre to help with the integration into society of those with AS and their families.
  • It aims to deepen reflection on the mental handicap aspects of AS and to broaden perception of the differences involved.
  • It increases public awareness of and affects public opinion concerning AS.
  • It encourages and assists research by informing and sensitising medical, paramedical, social and medico-social groups on traditional and innovative educational methods adapted to AS.
  • It cooperates, in meetings and other events and also through social networks in exchanges of information, experience and ideas with other regional and national associations who have the similar values and objectives.

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.

Notable S A F activities in recent years:

  • Two books and one study have been published:

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.

  • A Survey of Angelman Adolescents and Adults” (April 2013) by Odile Piquerez.

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.

http://www.syndromeangelman-france

op – ac – fév 2016

 

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