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Last February 26 was held at the auditorium of the Social Cultural Center Jail Totana a debate organized by the Association for Rare Diseases and Gene D'TGD Murcia, on the "Rare Diseases Social and Health A Priority" .
Gene D'Association organized a debate last Thursday on the occasion of World Day for Rare Diseases of the problem of the same, and future prospects in the Region of Murcia.
In the debate were Dr. Encarna Guillén, head of the Unit of Medical Genetics, Hospital Virgen de la Arrixaca, Naca Eulalia Pérez de Tudela, president of the Association D'Genes, Carmen Moreno Porcar family affected by a rare disease Ignacio Provencio, affected by Narcolepsy and Gabriel Serrano affected Humeral Dystrophy, Facio scapula.
The debate was moderated by the Delegate of ERDF in the region of Murcia, Juan Carrion Tudela.
During the same is able to analyze the different needs of patients diagnosed with a rare disease and their families.
The importance of associations when the visibility of rare diseases, and introduced the various courses of action being developed in the Region of Murcia (Regional Registry consolidation of Rare Diseases, the incorporation of specific actions in the plan health of the Region of Murcia and direct care by the Unit of Medical Genetics, Hospital Universitario Virgen de la Arrixaca.
ALEJANDRO VALVERDE SQUAD JOINS RACE IN RARE DISEASES
Alejandro Valverde, winner of the Tour of Spain 2009, opened his home to receive the Rare Disease Association D'Genes and ERDF.
The rider from Murcia, endorsed and made available to D'Genes, with the intention of giving visibility to rare diseases, becoming part of the honorary members of this association.
Alejandro Valverde recorded a message of support that is incorporated into the video to be screened at the dinner - gala for the World Day for Rare Diseases.
In addition, the rider gave to the Association with a signed shirt to be drawn to charity and the winner's jersey of the Tour of Spain 2009 to be framed in the local office of D'Genes.
Association D'Genes and FEDER thank Matías Navarro and Antonio Sabater, who have enabled this approach to the figure of Alejandro Valverde.
INFORMATION STAND FOR THE COLLECTION OF SIGNATURES ON THE OCCASION OF WORLD OF RARE DISEASES
During the past week and because of the many acts that are being carried out by the celebration of the Second World Day for Rare Diseases February 28, have been placed informational booth at various centers in the Region of Murcia.
On the occasion of the celebration of World Day II Rare Diseases are many events taking place in the Region of Murcia, organized by the Spanish Federation for Rare Diseases (ERDF) Delegation of Murcia with the Association for Rare Diseases and PDD D'Murcia Region Genes.
Among these acts and for the second consecutive year, have been placed in the hospital stand Virgen de la Arrixaca of Murcia, Hospital Rafael Méndez de Lorca and IES
Juan de la Cierva of Totana to raise awareness of the conduct and actions to be carried out in the "World Day for Rare Diseases."
In addition to reporting on the celebration of World Day II ER
have collected signatures demanding more research and shopping, drive, or referral services to improve the quality of life of people living under the slogan "We know what we want, RE Social and Health a priority."
Source: D´Genes
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