Success of the First Meeting of Families Fragile X organized by the Association for Rare Diseases D'Genes in order to generate a living space to share needs and concerns.
The working group has Fragile X D'Genes held today in Totana this meeting has allowed children and adults living with Fragile X enjoy prepare by volunteer and professional activities of the association.
Families were able to share their daily lives and know the resources provided D'Genes besides knowing the project activities to be developed by the working group Fragile X D'Genes in the Region of Murcia.
D'Genes president, Juan Carrion, stressed "the importance of joining together and be together and to address the major challenges that lie ahead, which are to respond to each and every one of the needs that everyday we encounter. "
Fragile X Syndrome is a rare disease with a prevalence in the Region of Murcia and from the working group on this topic launched by D'Genes it aims to share experiences and improve the quality of life of those affected by this pathology in the region.
Source: D´Genes