Portal de Totana
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The Mayor of Totana, José Martínez Andreo, accompanied by the regional secretary for Social Policy, Fernando Mateo, and the general director of Volunteer and Immigration, Leopoldo Navarro, among other officials yesterday inaugurated the Second National Meeting on Rare Diseases under the motto "United normalize the situation that determines our social life ", held over the weekend in Totana.
At the meeting, which aims to raise awareness to the citizens of the difficulties found these patients daily, have gathered more than a hundred medical researchers and families of people with such diseases.
The theme of the conference highlights the importance of being united to work for a real social integration of people suffer every day the consequences of a rare disease and socio consider the needs of those affected by rare diseases.
The Mayor of Totana, José Martínez Andreo, welcomed all participants who have gathered at the Center for Continuing Education of Hemophilia and stressed the need for concerted efforts to search for resources that have an impact on improving the quality of life and care of patients and their families
He also expressed his satisfaction at being able to collaborate from the administration in organizing the event and help these families who are really suffering from this problem 365 days a year.
In this regard, he congratulated the President of the Association and all its board by "the desire, effort and enthusiasm" inverted when organizing an event of this kind, which will set a benchmark in regional, national and international.
Martínez Andreo made a commitment to continue contributing to the initiatives presented by this partnership and take actions that contribute to improving the quality and life expectancy of patients and their families, calling the investment of study and research of this type of pathology , affecting one in 2,000 people.
In addition, the municipal councilor showed pride Totana means for the second consecutive year to host a national gathering of its kind, bringing together health professionals, relatives of patients and even patients
However, he recalled that the local corporation has adopted several motions which sought to urge the Regional Government to implement a comprehensive care plan for rare diseases within the Health Plan of the Autonomous Region of Murcia and the implementation a Medical Genetics Unit of reference in the Hospital Virgen de la Arrixaca of Murcia.
In addition, it supported the creation of an appropriate register for Rare Disorders, enabling the identification of the affected population in the region and the establishment of a Regional Commission for the preparation of the Comprehensive Care Plan for rare diseases made up the members mentioned above.
Source: Ayuntamiento de Totana
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