Portal de Totana
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More than 20 cultural activities, health, sports and celebrate solidarity actions taken by Gene D'Totana Association and the Spanish Federation for Rare Diseases framed in the celebration of World Day for Rare Diseases, on 28 February.
The councilman of Health of the City of Totana, Trini Cayuela, explained that the local administration is betting that pathways associated activities are carried out to advance both the visibility of patients in low-prevalence diseases, such as research activities.
In this sense, the mayor pointed out that thanks to the work of these associations ensures that more than 3 million patients suffering from these diseases to obtain a better quality of life appropriate to their disease.
For his part, CEO of ERDF in Murcia, Juan Carrion, has indicated that organized coordinated activities of various types with other agencies such as the University of Murcia, Murcia Health Service, which began last week with a conference participation Route Mallorca or Ecotourism for Rare Diseases of the Sierra de María.
As for cultural activities, next February 11 will hold a promotional event of the Association in Diego Martin concert in Murcia, the 12 will take place in the football match between El Pozo Murcia Turística and Zaragoza; and participate in volunteer samples X in the Paseo Alfonso X El Sabio, among other activities.
In addition, next February 14 will be held an act of awareness in the Faculty of Medicine, and 22 will be installed an information table at the Hospital Virgen de la Arrixaca, the 23 is held in the School of Social Work and 28 are held in the Faculty of Medicine a talk with the exhibition "Rare Diseases lively."
As the president has advanced from ERDF, on 3 March will present the Awards of the Spanish Federation in the Senate and Princess Letizia Ortiz will be responsible with the Minister of Health, Leire Pajin, which distinguished persons or agencies that carry out important work with the Association.
Thus, according to Carrión will distinguish the figure of Dr. Murcia, Encarna Guillén, who has led the association since its inception D'Genes.
Activities in Totana
In Totana will be held on February 19 a day of respite on the occasion of World Day to be held in the Auditorium Marcos Ortiz.
The February 26 race will be held solidarity for rare diseases will start from the Polideportivo Municipal de Totana at 17:00 pm and evening Solidarity Dinner will take place in which awards will D'Genes Pedro Miras in the restaurant.
February 27 will be held reading the manifesto of the World Day for Rare Disorders, along with a batucada, mass release of balloons and artistic development of a panel with schools in the region of Murcia on the Square Constitution.
Source: Ayuntamiento. Foto: Totana.com / Video: Totana.TV
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