The councilman of Health, Trini Cayuela, the councilman of Social Welfare, Juan Carrion, and the president of the Association for Rare Diseases and Disorders of Development Graves "D'Genes" of Totana, Naca Pérez de Tudela, accompanied by members of the Board Policy, presented the program of activities organized to commemorate the World Day for Rare Diseases "under the slogan" We know what we want: Rare diseases are a social and health priority. "
Through these acts, to be held from January 20 to March 7, is to launch a cry of solidarity towards those affected and thus develop a social awareness campaign to give visibility to the serious public health problem involving these conditions.
Also, the mayor of Health has shown its full support and collaboration with "D'Genes", the delegation representing the National Federation of Murcia to Rare Diseases since been fighting to improve the quality of life for those affected and their family, advocating for investment in research of this type of pathology.
Similarly, Carrion Tudela has announced that both municipal departments submit a motion to the full City Council for institutional commitment to the commemoration of World Day for Rare Diseases participating in the acts to be performed and to join the claims is presented through the awareness campaign.
The general objectives of the campaign for the ER, which will be the visual image of the Spanish national team player and FC Barcelona, Andrés Hiniesta are raising funds for social projects and services for families with ER, the ER visibility in the media, the ER position on the political agenda: To urge the administration to push Centres, Services and Reference, position the brand ERDF.
Exploitation of the same concept of rare diseases and position it as ERDF and community cohesion Rare Diseases through mobilization.
The president of "D'Genes" Corporation thanked all the support shown from the beginning of his career and the solidarity shown by all totaneros that in one way or another have worked with their support "in making more visible every day needs of this group. "
Finally, municipal authorities and members of the association encouraged all citizens to participate in these events organized to work together and "act together to hear one voice."
The program of events
The program of events organized for the global commemoration of this day will kick off on Wednesday, January 20, with the ERDF Murcia meeting with the associations of the Region in the Centro Cultural Puertas de Castilla de Murcia at 18:30.
On Sunday 24 January will be a path in the ER quads in the place of the Espuña, organized by Action Quads Totana and D'Genes, and Monday, January 25 will proceed to the launch of "rare diseases.
Manual of humanity. "
On Monday February 1 will be offered a press conference for the presentation of the "Guide for psychological support" and Friday February 5 Regular Assembly will be held to commemorate the World Day of the ER at the Civic Center people over Totana.
Also on Monday, February 8 will present the study seriously on ER "and on Tuesday, February 9 will open the photo exhibition" Rare diseases are full of life "and will be held a talk at the Universidad Popular de Mazarrón.
Similarly, from 8 to 19 February will hold the "Days of awareness of the World Day of the ER" in the IES "Juan de la Cierva y Codorniu" of Totana, and on Monday 15 February, put an information booth Hospital of the Arrixaca de Murcia, and on Tuesday 16 February at the Hospital Rafael Méndez.
In addition, on Thursday 18 February, representatives of D'Genes and FEDER Murcia participate in the event of ER in the Congress of Deputies at 17:00.
From 18 to 21 February will be visible activities of ER of FC Barcelona, organized by the Rock Barcelonista of Totana, Murcia D'genes and FEDER, and from 22 to 28 February, is placed a stand of ERDF and D 'genes at the fair of volunteering at the Catholic University San Antonio de Murcia (UCAM), Paseo Alfonso X El Sabio in Murcia.
On Monday February 22 will proceed to read the manifesto of the World Day of the ER at the local office of the Spina Bifida Association of Murcia, and Thursday February 25 this manifesto was read in front of City Hall at 12:00 hours.
On Friday 26 February, will host a discussion on "ER debate.
Prospects, where participating physicians, policy makers, journalists, patients and relatives, and Saturday 27 February, the charity dinner held at the restaurant Pedro Miras de Totana.
Finally, on Sunday 28 February, Day ER, representatives of Murcia and D'ERDF genes involved in the race for life in Madrid, and Saturday 6 and Sunday 7 March, a pilgrimage to the jubilee year of Caravaca Cross 2010.
Source: Ayuntamiento de Totana. Fotos: Totana.com