Portal de Caravaca de la Cruz
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The mayor has joined the claims of the Spanish Federation of Rare Diseases (FEDER), calling for more research and support for patients and families
The City Council of Caravaca de la Cruz has hosted the regional event organized on a regional level to mark the 'World Day of Rare Diseases', which was chaired by the mayor of the city, José Moreno, and by the Minister of Health of the Region of Murcia, Encarna Guillén.
The event, which took place in the Plenary Hall, was also attended by the President of the Spanish Federation of Rare Diseases (FEDER), Juan Carrión, and the delegate of the federation in Murcia, David Sánchez.
The audience heard the courageous and emotional testimony of Antonio Marín, the Association with Muscular Dystrophy of Waist Cehegín, and Rafael Moreno, Association 'Rafa Can' Cartagena.
The mayor said that "for Caravaca de la Cruz it is a pleasure to host the event of the 'World Day of Rare Diseases', coinciding with such special dates as the Jubilee Year 2017," while conveying his congratulations to all The associations that make up the Spanish Federation of Rare Diseases "for the work they carry out to make society and the public aware of the reality of rare diseases."
José Moreno wanted to emphasize the importance of research to address the high degree of ignorance surrounding these diseases, "since the delay in diagnosis usually leads to an aggravation of the disease and in many cases, there is a lack of treatment cash".
"An advanced society like the Spanish can not ignore this reality and must attend to the needs of these patients and their families," he said.
For its part, the Minister of Health has advanced some of the lines of the Comprehensive Plan for Rare Diseases in the Region of Murcia, which has contributions from 89 experts from the social, educational and health fields.
Under the name of rare diseases or low prevalence (less than one case per 2,000 people) a group of diverse pathologies are grouped on which one has incomplete knowledge.
It is estimated that there are currently between 5,000 and 8,000 different rare diseases, affecting between six and eight per cent of the population.
And in the Region of Murcia about 85,000 people suffer from some of them.
The campaign of the Spanish Federation of Rare Diseases (FEDER) on the 'World Day of Rare Diseases', held with the motto 'Research is our hope', seeks support to increase the number of studies conducted to learn more about Fund these rare pathologies, and fight against them to change the course they have followed so far.
To this end, they propose, among other things, to establish a system that encourages scientific research on rare diseases as a priority patronage activity within the General Budget Law of the State.
Source: Ayuntamiento de Caravaca de la Cruz
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