Portal de Jumilla
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Councillor for Public Health, Lucia Jimenez, presented this morning the activities organized to mark the International Rare Disease Day is celebrated on February 29.
"The goal is to provide information on the many types out there and try with such acts further research on them," said Jimenez.
In Jumilla, on Friday 26 will be held Storytelling by the writer and contributor to the Editorial Isekin, Ana Maria Molina, who has accompanied the mayor of the area in the press conference.
It will be held from 17.00 in the multipurpose room of the Public Library and will consist of telling stories related to rare diseases, "but in a playful way and motivates to keep fighting," noted the writer of 'Super Carla '.
On Monday 14 March at 19.00, also in the Municipal Library, a photo exhibition will be visitable until Friday 18 under the theme "The life filled with rare diseases' will open.
Then a briefing by the Chairman of Feder, D'Genes and Aliber, Juan Carrion, and the president of Aelip, Naca Perez offer.
Lucia Jimenez stressed that: "In the talk will report on the current situation of rare diseases in the Region of Murcia, so that it can be very interesting for the families of the jumillanos affected by any of these diseases."
It has also indicated that are named for the small number of cases and that those who suffer have in most situations a short life expectancy, so further research is essential.
Source: Ayuntamiento de Jumilla
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