Portal de Cehegin
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The Association for Rare Diseases D'Genes, will soon open an office in the Northwest Region based in Cehegín, thanks to the agreement signed Cehegín Mayor Jose Rafael Rocamora Gabarrón, and the president of D'Genes, Juan Carrion .
At the ceremony, also attended by the Councillor for Social Services owner, Antonia Fernández Nieto and the coordinator of the Association in the Northwest, Pascual Donate.
The delegation of Cehegín, whose headquarters will be located in one of the offices of the Casa de la Cultura, serve as a reference for other municipalities in the region as Moratalla, Calasparra, Bullas and Caravaca de la Cruz.
This new delegation D'Genes, which will open in Cehegín, will Donate Pascual as coordinator.
The duration of this assignment, according to the agreement signed, will be one year, with possibility of extension up to 4 years.
With the opening of this new office, D'Genes intended that all those who are affected by a rare or being diagnosed disease that area know they are not alone.
Cehegín Mayor commented that it is a great satisfaction "the power to perform such actions that contribute to improving the quality and life expectancy of patients and their families, and a breath of encouragement for all"
In turn, the Councillor for Social Services, said that "this initiative is aimed to fulfill what is one of our election promises, to collaborate with the school bus so that we get an effective integration of these people into society and so to meet their demands. "
Juan Carrion, meanwhile commented that "the City of Cehegín is an example of collaboration towards this group, which will now have a closeness from this September when it is launched"
We recall that the Association of Rare Diseases and other Serious Developmental Disorders, D'Genes, born under the chairmanship of Naca Eulalia Perez de Tudela on 25 January 2008. It is located in the narrow street, No. 4 in the Murcia town Totana.
It is composed of parents, families and professionals from various fields in order to create opportunities for exchange and coexistence, in addition to raise awareness about the public health problem posed by ER.
D'Genes is included at the national level within the Spanish Federation for Rare Diseases (ERDF), functioning also as Murcia delegation of the Federation under the direction of Fina Martinez.
And as a member of the ERDF, the Association is part of a non-governmental organization known as EURORDIS (European Organisation for Rare Diseases).
This federation works since 1997, representing more than 340 organizations ER in more than 38 countries.
It is run by patients and individuals active in the field of RD, acting as spokesman at European level in different institutions and platforms (presence in the Committee for Orphan Medicinal Products, European Patients Forum, Group EMEA / CPMP Working ...).
Source: Ayuntamiento de Cehegín
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