The Councilors of Health and Social Welfare, Inmaculada Blázquez and Javier Baños, have recently attended the closing ceremony of the XXX Training Days organized by the Murcia Regional Association of Hemophilia at the Center for Permanent Training and Day in Hemophilia "Manuel and Javier Moreno "from the urbanization" La Charca ".
In them, which have taken place from July 15 to 26, more than 50 children, between 8 and 12 years old, and professionals have met, with the aim that they learn to develop autonomously through the carrying out various types of activities.
The main objective of this initiative was that participants acquire knowledge about hemophilia, learn to perform de-therapy exercises for the maintenance or recovery of joints, and train in the technique of treatment to enable them to have greater hospital and family autonomy, since the dependence on medical treatment , together with joint problems, constitute the main barriers to the social integration of children.
The Councilor for Health stressed the "important work done by this association for children to learn to know themselves and gain autonomy."
The Region of Murcia, where there are 85 patients belonging to 56 families affected by this genetic pathology, was the first community to genetically study all patients and mothers who were carriers, and get the hemophilic population to be analyzed from a genetic point of view.
These studies allowed to discover six alterations that were not described.
The Autonomous Community of Murcia has the Regional Comprehensive Plan for Rare Diseases, which includes a set of measures to advance the care, coordination and investigation of diseases of this type.