Portal de Totana
www.portaldetotana.com
Around fifty people participate tomorrow, 13 February, in Totana in the First Meeting of Families Fragile X, a day that will be used by affected by this disease to pool shares to develop and how they deal with this disease.
The meeting, organized by the Association of Rare Diseases D'Genes and the Working Group of Fragile X of this same entity, will take place at the Hotel Executive Sport Totana and it is expected to involve about twenty families in the Region Murcia anyone whose members suffer from this disease.
This event aims to be a meeting point for the operationalization of the Working Group of Fragile X D'Genes and allowing families living with this disease share experiences.
It will also serve to plan and study actions to develop in the future to give visibility to this syndrome and improve the quality of life of those affected and parainformar of projects and objectives D'Genes XFrágil plans to develop in the near future.
Source: D´Genes
Privacy policy
- Legal notice
- Cookies