Portal de Totana
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The Associationof Rare Diseases "D'Genes" in Totana has organized an extensive program of activities for World Rare Disease Day is commemorated on 28 February.
The Councillor for Social Care, Josefa María Sánchez Méndez, and the president of "D'Genes", Juan Carrion, accompanied by an officer of the association, Juan Crespo, have unveiled the different events planned to give visibility to the reality of rare diseases.
Among other events, this coming Friday, January 30, at the Full Council of Totana a motion of support for rare diseases will be discussed.
Similarly, it is noteworthy cycle solidarity concerts are held at Plataea Loungebar and Rock Café, under which the 30 January will be a concert in the latter cafe.
The February 7 Galade serála Dinner Awards Ceremony D'Genes 2015 awards with which the association wishes to acknowledge the work and support institutions, organizations, professionals and individuals have served the cause of rare diseases.
That same day, the association "Sin Salsa No Hay Paraiso" has also organized a solidarity dinner carnival with rare diseases.
Daily NextPrice V Rutapor Rare Diseases, which will start and finish in Totana the Andalusian village of Mary, will bring surely a good number of people.
On February 14 the Multidisciplinary Center "Celia Carrión Pérez de Tudela" Totana host the Experiential Workshop "Therapy and body language".
Moreover, there will be several visibility actions related to the world of sport, such as football match on February 1 between the Cartagena andThe Hoya, the basketball game will face the February 15 UCAM against Zaragoza's party UCAM football between CF and Real Betis B on February 22 or the match between Real Murcia CF and Zamora March 8.
In addition, once again, this time from 25 to 28 February, D'Genes involved inthe Volunteer Feriadel organized Porla University CatólicaSan Antonio de Murcia.
On the other hand, from 23 to 28 February will be held in Cehegín a photographic exhibition entitled "The ER full of life".
It is a traveling exhibition that has helped the partner Barcelonista Totana Peña Juan Manuel Martínez Casanova and will tour other cities such as Alhama de Murcia, Cartagena or Vitoria, among others.
Also, the March 14 will be a talk entitled "Health and electromagnetic fields" in the Multidisciplinary Center "Celia Perez de Tudela Carrión".
The March 15 serála III MarchaMtb for Rare Diseases in Caravaca dela Cruz.
Also among visibility activities include reading the Manifesto of World Rare Disease Day, to be held in Totana at school, "Luis Perez Rueda" on February 24.
Other activities include a series of film forum on rare diseases in three different scenarios: the prison Murcia I, the artillery barracks and the University of Murcia.
It has also organized a training cycle in Murcia I Penitentiary where awareness campaigns will also lead to rare diseases as paint and poetry.
Juan Carrion Ministry has prepared a program in which nearly a month daily activities have been organized to bring the reality of rare diseases to society.
In this regard, he stressed that "includes actions of visibility, awareness in schools and political action in the city of Totana as a benchmark in the care of people with rare diseases."
In this sense he emphasized two main lines claim to have the group of families affected by low-prevalence diseases, which are the establishment of a protocol of care for people affected undiagnosed and access equity guarantees necessary treatments to anyone anywhere in Spain.
For his part, Councillor Josefa María Sánchez, wanted to thank and congratulate D'Genes for the work that develops 365 days a year for people affected by a rare disease and their families.
Rare diseases are those that affect fewer than 5 in 10,000.
Today there are about 7,000 identified rare diseases that affect 7% of the world population.
In total, it is estimated that over 3 million people with rare diseases exist in Spain.
Source: Ayuntamiento de Totana
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