Portal de Alhama de Murcia
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The Association for Rare Disorders Alhama represented by Paqui Marin and Roberto Abellán, with Mariola Guevara, Councillor for Education and Health, presented the activities to be performed in the municipality of Alhama on the occasion of the commemoration of World Day Rare diseases.
Paqui Marín commented that they will perform various activities in Alhama, specifically on Saturday 27 February, from 10 to 13, will be installed in the Plaza of the Constitution an information stand on D'Genes and the World Rare Disease Day also Taichí an open session with Pedro San Lazaro will be held.
Marin has invited neighbors to visit the booth to learn about the Association D'Genes, and pointed out that it is a non for profit association that provides support and services to patients with rare diseases as a family.
Marin recalled the theme for the World Day of Rare Diseases, "Join us to make the voice of rare diseases hear" slogan because many people still do not know what is a rare disease, noting that a disease rare disease is one that has a low incidence in the population, particularly affecting less than 5 in 10 people, but these rare diseases affect a large number of people, and also, according to the world health organization there are about 7000 rare diseases.
Roberto Abellán on the other hand, said that on Sunday February 28 will perform a benefit concert for the Association D'Genes, at the Cine Teatro Velasco, whose tickets can be purchased at the Archaeological Museum Los Baños and in box office at the price of 5 €, also having zero line for those who can not attend and want to collaborate.
Roberto showed the delegation on behalf of Alhama D'Genes, users D'Genes and family, thanks to groups the concert, which will play altruistically and the council for his willingness from the start to the organization of these events.
The groups performing are "The neckline Lucia" where poetry plays an important role in their songs and catchy rhythm.
Also act "Feint", songwriting, folk, pop and indie, and "Fitz" rock band Alhama, which is part of Roberto, they played an acoustic repertoire.
Special guest will have Amarela, and his work "The Journey of Light" with full sensitivity melodic themes.
Guevara noted that the objective of these activities is simply to create and raise awareness of these diseases, recognizing them as a priority in public health, and to improve and increase research into finding treatments.
The mayor encouraged all residents to participate in these activities and thanked the members of the association for the great work they do, and pointed out that the association has facilities in Alhama, in the main square of the Constitution, in the pedestrian access to parking, where anyone or family member suffering from this type can run on schedule Tuesday and Thursday from 18 to 19.30.
Source: villadealhama.es
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