Answer to personal requests of families

While Fragile X Syndrome childrens grow up, families have specific needs and problems that usually require specific strategies. For example, when choosing the school, to file applications or requests for an educational aid, a disability certificate, etc.

In this respect, the Society does not only prive an answer to the huge variety of enquiries, but also we receive, coordinate, and forward them to guarantee an approptiate solution.

What’s more, we keep in contact with the Genetic Services which have the most advanced techniques in molecular diagnosis, and also teams that offer medical and psychological control and monitoring for those affected by Fragile X Syndrome.

Answer to information requests

Fragile X Syndrome is still to this day one of the largely unknown syndromes, so we constantly receive requests for information. To satisfy this need, the Society has a library, a database, a unit of resources and bibliography at everyone’s disposal for professionals, families and students.

Psychotherapy Treatment Service

Once families receive the Fragile X Syndrome diagnosis, all the vital parameters are put at stake: they suffer a huge and deep existential crisis. Parents experiment mixed feelings, along with pain, frustration, guilt, discourage…

Usually, a family receives the first diagnosis in a center with doctors who neither have the availability nor the setting or time necessary for the parents to ask, talk or express their doubts and fears… The pain often stays locked and parents leave with a huge burden they fail to understand, “something” they are not able to foresee to what extent will alter their lives.

To give parents the chance to talk, ask, express their feelings, and so start the process of reorganizing their lives, we offer psychotherapy sessions with our psycholosit, Eduardo Brignani.

Mutual Support Groups

These groups represent periodic parents’ meetings where they discuss amongst themselves in a close environment, enabling the sharing of feelings and experiences and help them find strategies to face life and their children’s particular circumstances.

The groups are leadered by the psychologist of the Society, Eduardo Brighnani, and we meet every last Thursday of the month.

 Visits to the diagnostic centers

We visit the professionals of the health centers, where they diagnose FXS, in order to provide specific information on Fragile X Syndrome and introduce our Society and services by means of leaflets. In this way, the professionals are able to refer diagnosed families to the Society.

 School Counseling Service

This project bridges Schools and Society, and we aim at:

–          Offer information on Fragile X Syndrome

–          Help define specific learning strategies for each child, studying their particular needs and characteristics.

–          Advise teachers, teachers of special education, EAPs, tutors, …

–          Direct observations into the class

 Our magazine

Every three months we release a humble magazine to notify and inform of our activites, interesting news, past and coming events… and it has become a succesful way of communication with our families.

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