Portal de Lorca
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The exhibition, organized by the Asociación de D'Genes in collaboration with the Aelip Association, is carried out with the aim of disseminating rare diseases, giving real information about the people who suffer from them, covering all ages and aspects of life. the affected
The Councilor for Health of the City of Lorca, María del Carmen Ruíz, opened this morning together with the president of the Association of relatives and affected lipodystrophies (Aelip), Naca Eulalia Perez de Tudela, and the director of the Association of Genes , Miguel Ángel Ruiz, a photographic exhibition on rare diseases that can be visited in the "Parque Almenara" Shopping Center until February 28th.
María del Carmen Ruiz has reported that "the exhibition of photographs" Rare diseases full of life "is formed by a collection of 60 images made by the Association of Genes, which seeks to reflect through them the day to day of people Who have a rare disease. "
"The aim of the exhibition is mainly the dissemination of rare diseases, giving real information about the people who suffer from them covering all ages and aspects of life of those affected. Images of everyday life, in the educational field, in therapeutic sessions, moments of leisure, in the association, etc. In addition, it is intended to be an itinerant exhibition at national level, what the Association of Genes and the Aelip Association are Working hard to be exposed in Madrid, Seville, Barcelona, ​​Ibi, Bilbao, Murcia, Santiago de Compostela and Toledo, coinciding in each city with a congress, act or day that is starring rare diseases.
The director of D'genes, for his part, has stated that "it is important for us as an entity to break through the images, the prejudices and fears that comes with living with a rare disease.This exhibition aims to show that people Diagnosed with rare diseases are, above all, people and that, with the right means, they can achieve full development within their capabilities. "
The Association of Rare Diseases of genes, created in 2008, is made up of parents, relatives, professionals from all fields with the purpose of creating spaces of exchange and coexistence between relatives and people diagnosed with Rare Diseases (RL) On the public health problems of low prevalence diseases.
In addition, he is currently a member of the Spanish Federation of Rare Diseases (FEDER), the European Organization of Rare Diseases (EURORDIS) and the Ibero-American Alliance of Rare Diseases (ALIBER).
Source: Ayuntamiento de Lorca
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