Angelman Today January / February edition 2014 | Page 35

Tel.: [phone] [email protected] www.angelman-asa.org The Angelman Syndrome Association (ASA) is a non-profit organisation founded in Barcelona in October 1996, on the initiative of a group of concerned parents with children affected with this syndrome. Our association is comprised of an approximate number of 200 affected families dotted around the country. Our association was formed for the purpose of enhancing communication among the families, providing support, counselling and information, and fostering research for a deeper knowledge at all levels on the AS that will allow affected individuals to attain a better quality of life. Mainly concentrated on the purpose of supporting the families of affected individuals, particularly those newly diagnosed, we have a supporting family network around the country who voluntarily provide support and advice to parents who require guidance and information. Moreover, we keep in contact with other international Angelman Syndrome Associations, to foster the exchange and sharing of information, as well as collaboration in all the different fields. FAMILY MEETINGS Every year we celebrate the family annual meeting to be held in the different autonomous communities. In 2013, this meeting was held in Torrejón de Ardoz (Madrid). During these encounters, we organise leisure and fun activiites for the children, as well as professional conferences on education, medical, social or legal issues. This way awareness is raised by sharing opinions and experiences among parents and keeping in contact with caregivers and medical professionals in the Angelman Syndrome. This year we have hosted Dr. Weeber and also Dr. Mayor.