The Association believes that being informed, feeling welcome and accompanied is very important for parents first facing a diagnosis, and eases the assimilation of the diagnosis and the subsequent coexistence with it.
Due to the social ignorance on Fragile X Syndrome, the anxiety and confusion generated in the families increases.
That’s why the association organizes different activities to inform and guide the families, and help them answer their doubts and problems.
Each year we organize this lunch where all the families meet new members in an ever growing association. We share experiences, time, and laughs with our children in a warm and friendly atmosphere.
Diagnosis of Fragile X Syndrome increases in number every year, but there’s still a lot of ignorance around it and its “treatments”. There’s a considerable lack of information in different spheres: educational, medical, social, political, work… That’s why we are making large efforts in giving information and raising awareness. At the same time we encourage the research on the Syndrome.
Here is a short list of some of our conferences:
2001: October, 27th and 28th. Interdisciplinary Conferences on Syndrome X Fragile, Barcelona
2003: May, 31st. Conferences on Information and the Inclusive Schooling debate, Barcelona
April, 24th. Informative conference on Fragile X, Lleida
May, 8th. Welfare needs on Fragile X Syndrome, Barcelona
November, 13th. 1st Internacional Symposium “Latest updates on Fragile X Syndrome”, Barcelona
2005: November, 19th. Work Insertion for Fragile X affected individuals, Barcelona
2006: April, 22nd. Informative Conference on Fragile X, Tarragona
2008: April, 4th and 5th: 2nd European Congress about FXS, Turin
November, 22nd: IV Symposium about Intellectual disability, Bailen
2009: November 21st: Interdisciplinary symposium about latest investigations on FXTAS and FXS, Girona
To make Fragile X Syndrome better known we organize activities like dances, concerts, exhibitions… and we also participate in conferences and activities organized by other associations and foundations.
A collection of informative leaflets
We have already published four leaflets, written by specialists that study a topic related to Fragile X Syndrome in depth. You can access them on-line in this webpage in the publications section.
If you are interested in receiving a copy or the new numbers, please contact us.
Meetings and lectures
We also prepare meetings or conferences for affected families. The topics of these lectures change according to the interests and needs of our families: so far we have dealt with behavior problems, sexuality, disabilities, Fragile X Syndrome, FXTAS…
These kinds of lectures usually have an informal and friendly atmosphere, so people can openly talk about doubts, experiences, worries…