The councilman of Health, Trini Cayuela, Councillor for Social Welfare, Juan Carrion, and the president of the Association for Rare Diseases and Developmental Disorders 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, to be held from 23 to 28 February.
To commemorate the first World Day for Rare Diseases, the majority of countries, with the European association Eurordis to the head, as noted by the mayor, "intend to launch a cry of solidarity towards those affected and thus develop an awareness campaign social visibility of the serious public health problem involving these diseases. "
Also, the mayor reminded the plenary of the Municipal Corporation unanimously approved the proposal presented by the Department of Social Welfare and Health, institutional commitment to the commemoration of World Day for Rare Diseases participating in the acts held on 28 February.
Cayuela Trini 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 families, advocating investment in research of such diseases.
For his part, Juan Carrión also recalled that through this proposal, the Council also joined the Declaration of Principles for State Pact for Rare Diseases.
The pact proposed by the Spanish Federation for Rare Diseases, is intended as part of a comprehensive and multisectoral in Spain that allows removing barriers and ensuring the rights of citizens in the process from research to access to health resources .
The president of "D'Genes", who thanked all the support shown the corporation since the beginning of his career, said that after the success of the European Day of Rare Diseases, held in the previous edition under the theme "One day only for unique people, countries around the world have decided to join the initiative led by the European Council belonging to Eurordis Alliances.
He also expressed "that 2009 will be the first year of solidarity and collaboration for families affected by ER will spread like a wave of hope across the planet."
The program of events
The program of events organized for the global commemoration of this day will start on 23, 24 and 25 February, with the spread of events organized to celebrate the "First Day of Rare Diseases and the Accession to the Global Compact of Rare Diseases ".
Day 23 is held at the Hospital Rafael Mendez (Lorca), day 24 in the Hospital "Virgen de la Arrixaca" (Murcia) and the Faculty of Medicine, University of Murcia, and finally, on Wednesday, day 25 February, the association will place an information booth at the flea market Totana Weekly.
To this day, at 19:00 scheduled a talk at the cultural center of Aledo.
Also, from 23 to 28 February will be an exhibition of photographs of rare diseases in the exhibition hall "Gregorio Cebrián, whose inauguration will take place on 23 February at 20:00 hours.
On February 27 at 12:00 pm will proceed to the reading of a manifesto for rare diseases at the front door of the City of Totana.
And at nine o'clock at night, will be held in the Performing Arts Board of the town, a theater of solidarity, which will be borne by the Theatre Company of Aledo, the profits will go to "D'Genes."
Finally, for the February 28, have organized the "Regional Workshop III for Rare Diseases, which will include the participation of speakers who specialize in this type of pathology, to be held from 18:00 hours in the Municipal Exhibition Hall "Gregorio Cebrián, and at night, from 21:00 pm there will be a gala dinner to commemorate the first anniversary of the association, in the restaurant Pedro Miras.
Entries, both the theater and dinner can be purchased at the Center Sociocultural "Jail" or by members of the board of the association or by calling 696 141 708.
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."
