Totana City Council has signed a collaboration agreement with the D'Genes Association for the promotion of quality in the care of people diagnosed with rare diseases, favoring their sanitary, psychological, educational and social support and that of their relatives.
The mayor, Andrés García, accompanied by the first deputy mayor, Juan José Cánovas, and the president of the Association of Rare Diseases D'Genes, Juan Carrión, have signed this institutional agreement in an act held in the plenary hall, staging the agreement approved by the Local Government Board on September 13, at the initiative of the Councilor for Social Welfare, Javier Baños.
Under this agreement, the Department of the sector is committed to coordinate joint actions with this entity to organize assistance resources in the care of this group in order to improve the quality of social assistance for people with rare diseases.
In addition, it will promote actions aimed at training and counseling family members of people with these pathologies, as well as professionals from associations related to this group in health or other areas.
Likewise, the Totanero Consistory will collaborate with D'Genes in the programs, protocols and research studies of the most prevalent or of special transcendence pathologies that affect these patients;
as well as in training, research, information and awareness actions in rare diseases.
The Department of Social Welfare will inform the families of children with a diagnosis of rare disease seen in the Child Development and Early Care Center of Totana, of the early care services provided by D'Genes, which in any case would be provided in conditions of gratuity.
Likewise, it will give an account to the families of the children with these pathologies that end their treatment at the Child Development and Early Care Center of Totana, upon reaching the age of 6 years, of the services provided by D'Genes so that this, in In your case, value offering resources or supports adapted to your needs.
For its part, the D'Genes Association is committed, among other objectives, to participate and collaborate in those activities promoted by the City Council in this area;
develop activities that affect the promotion and improvement of the health of people with rare diseases.
Similarly, this entity will collaborate, as far as possible, in the demands that the Department and the Center for Child Development and Early Care could present derived from the needs arising in relation to this group.
In fact, D'Genes will make available to the Department his team of professionals for the development of projects of mutual interest and offer free training to professionals of the Center for Child Development and Early Care in the field of rare diseases and periodic follow-up of all cases of early care arising from said center and those over six years of age.
Since 2008, the D'Genes Association has been creating spaces for exchange and coexistence between parents and children with rare diseases, raising awareness about public health issues in this field and putting in place actions to avoid social isolation of families with rare diseases.
Among its objectives, it is also important to carry out activities to disseminate rare diseases, carry out coordination activities to search for resources for patients and their families;
carry out actions to boost social volunteering;
promote healthy life habits;
promote conferences, scientific and technical forums, conferences;
and the labor and social integration of people with rare diseases.
For its part, the City wants to promote this collaboration in the field of early care in this field: for more than 25 years, uninterruptedly, has been providing services in the Center for Child Development and Early Care, from the public initiative, to all children from 0 to 6 years old and families with early care needs who request it.