Portal de Molina de Segura
www.portaldemolina.com
Molina de Segura will become 15 and October 16 in city international reference in Fragile X with the celebration at the Museum of the Enclave of the Wall (MUDEM) the Second National Congress of Fragile X, one of the rare diseases higher prevalence in the Region of Murcia, where there are more than 240 cases.
The Congress is organized by the Association of Rare Diseases D'Genes and the working group Fragile X D'Genes.
It also has the co-organization of the City of Molina de Segura and the Hospital de Molina and collaboration of the Autonomous Community of Murcia and the Spanish Federation for Rare Diseases (FEDER).
The presentation of the Congress took place today in the Plenary Hall of the City of Molina de Segura with the participation of the Mayor Esther Clavero Look, the President of D'Genes and National President of ERDF, Juan Carrion Tudela, Councilmember Public health, Esther Sanchez Rodriguez, Managing director of the Hospital de Molina, Pedro Hernandez Jimenez, Coordinator D`Genes Fragile X, Fabian Lopez Aguiar, and the Delegate of Murcia Feder, David Sánchez González.
In the MUDEM together professionals and researchers from social and health fields and education, aware of this disease and in which seabordarán the latest research, diagnostic and therapeutic as well as techniques that help improve the quality of life they will be given people afectadaspor this syndrome.
The Mayor of Molina de Segura, Esther Clavero Look, has stated that "this Congress, Molina de Segura commitment to people with rare disease and their families, a group that in the municipality now have six associations".
Clavero added that the dynamism that have gained in recent years these groups "requires us to live and participate in an active way in the visibility, research and, ultimately, in improving the quality of life of people affected by this syndrome. "
The working group Fragile X D'Genes in the region of Murcia, which was launched last year, is currently composed of fifty families.
This working group aims to inform families about the disease and on the research being developed internationally.
It also aims to enable a channel to share experiences to families living with this same syndrome as well as boost the operationalization of resources to help improve the quality of life of those affected in the region of Murcia.
Last year, the first edition of this Congress, held at the Catholic University San Antonio of Murcia (UCAM), brought together more than 180 people.
Source: Ayuntamiento de Molina de Segura
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