The first deputy mayor and councilor of Industry, Juan José Cánovas, has raised a motion for debate in the March plenary session in order to cede the building of the Child Care Center, located in the industrial estate, to the Association of Rare Diseases D'Genes.
The proposal of Juan José Cánovas advocates the cession of said infrastructure, in the manner legally considered by the municipal legal services, for the use by this entity of local, regional and national reference in the field of rare diseases, once made the planned investments of completion of the works and adaptation of the building.
Totana City Council has as municipal property the Child Care Center located in the El Saladar Industrial Park, and it has not been used to date because the works are in the middle and several legal problems.
Infrastructure that the Association of rare diseases D'Genes has requested several times for its use and management.
According to the initiative of the first deputy mayor, in the Center, owned by the municipality, the work and objectives of the D'Genes Association should be reconciled with the function of the Child Care Center that the entity itself will manage for the families that demand the service and meet the requirements.
On February 28, the "World Day of Rare Diseases" was celebrated;
a special date to commemorate the long struggle of relatives, research professionals and affected by these pathologies that until recently were not taken into account by the institutions or the society itself, having to face families and loved ones, this situation in deep loneliness or helpless.
In these years, there has been a very important turn in the attitude of social agents and society in general: at present, the visualization of this problem and efforts to advance, in a significant way in the provision of research resources, is a reality. , the campaigns of public awareness and the commitment of parties and institutions in that beautiful objective to which it has much to go in that exciting way.
The D'Genes Association, closely linked to Totana, has a national and international projection that is a reality in various parts of the world.
This is a non-profit association with social and fiscal address in the San Cristóbal street of this town and registered in the National Registry of Associations with number 605665 and declared an Entity of Public Utility, dated June 29, 2012.
The D'genes Association since its foundation on January 25, 2008 has consolidated a portfolio of services that meets the needs of people with rare diseases and their families, as well as serious development disorders in the municipality of Totana. and district and that is encrypted in more than 120 weekly sessions through its different services.
In addition, in just 10 years of operation, it has consolidated a portfolio of socio-health care services for people with rare diseases and their families and people with disabilities, through the offer of a national reference center and the first accredited center in Attention Early in rare diseases "Celia Carrión Pérez de Tudela", which was inaugurated on February 27, 2014 in Totana.
Likewise, D'Genes, opened on February 23, 2018 the first Center for the Care of People and Families with Fragile X Syndrome and other rare diseases in the city of Murcia.
The D'Genes Association has developed five working groups with its own functioning, highlighting the group D'XFrágil genes, Pigmenti Incontinence D'genes, Diagnosis without genes, Epilepsy D'genes and Porphyria D'genes.
On the other hand, this same year 2019, the XII International Congress of Rare Diseases is consolidated, being the most important congress in terms of national participation in the sector of reference.
In relation to the Law of Personal Autonomy and protection of people in situations of dependency, D'Genes has as a project the work with people and families in cohabitation and tutelage units that allow inclusive leisure, family respite and the promotion of the reconciliation of work and personal life for families of people with rare diseases and other disabilities, and the current Child Care Center, located in the industrial estate, can play a large role in this project.
In the motion, it is considered appropriate and most appropriate that said municipal building be used for its management by the D'Genes Association, provided it is compatible with the purpose for which it was designed, once the works are completed, which will finance the SOLTEC company in the framework of the agreement signed by the City of Totana and the aforementioned company.
Several requests for assignment for use
On July 8, 2011, FEDER Murcia and D'Genes submit a request for the transfer of use of the building center Reconciliation of Family and Work Life located in the industrial estate "El Saladar", whose request contained the proposal of assignment and the obligations that both entities undertook to assume.
On April 20, 2012, another brief was submitted again, adding information to the previous request requesting that the final proposal be carried out in full and where the commitment of the D'Genes Association to the management of the center was extended.
In October and November 2016, meetings were held with the mayor of Totana, in which the transfer of the center for therapeutic activities, family respite and leisure for the benefit of people with rare diseases and disabilities was requested again;
as well as the fulfillment of the Totana motion as a solidarity friend with rare diseases, placing a monument in a public space and commemorative plaques in the different entrances of the municipality.
In the year 2018, D'Genes wrote to all the municipal groups, urging the use and management of the Family and Work Life Conciliation Center located in the "El Saladar" industrial estate, with D'Genes committing to a adequate and transparent management of it.
