Portal de San Javier
www.portaldesanjavier.com
The councilman of Culture, Inmaculada García inaugurated last night the exhibition "Rare Diseases. Full of Life" which will be open until 19 February in the Municipal Museum of San Javier.
The exhibition is organized by the Spanish Federation for Rare Diseases, FEDER, and the association of rare diseases and other severe developmental disorders in the Region of Murcia, D'GENES.
The exhibition features about 80 photographs, mostly of children and young people, with names that have any of these rare diseases and with the eyes of his close-ups intended to remember that "rare diseases are not people" , as summarized Juan Carrion, president of ERDF.
Accompanied by John Carrion, Rafael Moreno, representative of the association in San Javier and the Mar Menor, the mayor of Culture, Inmaculada García expressed "satisfaction that makes us open the doors of the museum, in the month that marks the Day Rare Diseases, to host this exhibition of photographs and thus contribute to raising public awareness about an issue that affects thousands of people. "
Both John Carrion Rafael Moreno are parents of children with rare diseases and both agreed on the importance of partnerships and share experiences with other families with the same diagnosis.
Rafael Moreno, a resident of San Javier, knows what he is facing a Moebius Syndrome, a disease that is sick of her son Rafael, nearly 3 years, who asks to look into the eyes in the photograph stars for the show.
Her parents have created their own website, www.rafapuede.es, a newspaper approached from positivism and hope.
ERDF, which offers a broad portfolio of services to affected families, represents 900 rare diseases, there are the 8,000 identified in the world.
In the Region of Murcia is estimated that 85,000 people affected by rare diseases, according to the records that started a year ago.
Diseases that doctors themselves know next to nothing and about which there is a protocol, Juan Carrion said adding that in the Region of Murcia has managed to incorporate some of them in the Health Plan and is working with the Department to establish a protocol for these cases.
The exhibition will be open at the Museum of San Javier until February 19 from 09:30 am to 14:00 pm.
and 16:00 to 19:00.
Tuesday to Saturday, and Sunday from 10:30 h.
to 14:00.
then travel to Bullas, Murcia and the Hospital of Saint Lucia in Cartagena.
Source: Ayuntamiento de San Javier
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