Portal de Cehegin
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The Association for Rare Diseases D'Genes, has opened its headquarters in one of the offices of the House of Culture Cehegín, which will serve delegation in the Northwest Region.
The event was attended by the Mayor of Cehegín, Jose Rafael Rocamora Gabarrón;
D'Genes regional president, Juan Carrion, Councillor of Social Services owner, Antonia Fernández Nieto and the coordinator of the Association in the Northwest, Pascual Donate;
as they have also been collaborating as Mari Carmen Llorente.
Last August this cession, now sees reality through an agreement between the municipality and the Association, and serve as a reference for other municipalities in the region as Moratalla, Calasparra, Caravaca was signed Bullas and the Cruz.
This new delegation will D'Genes 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.
The new store will have office hours on Tuesdays and Thursdays from 9:30 to 13:30.
It can also be contacted through the phone 968 743 287 and 696 141 708.
With the opening of this new office in Cehegín for the whole region, of D'Genes intended that all those who are affected by a rare diagnosis or disease process, as well as their families, they know they are not alone and they can learn and work services provided by the association, whose headquarters is located in Totana, where has the Multidisciplinary Center 'Celia Carrion Perez de Tudela', attended by users throughout the Region of Murcia.
Another of its aims is to raise awareness of public health issues suponene more than 7,000 rare diseases there, according to the World Health Organisation, as well as create opportunities for exchange and coexistence between relatives and parents with children affected to avoid social isolation.
Cehegín Mayor had words of thanks and encouragement to the Association born with "the vocation of helping others and we, from the City Council, we have put a step to continue fighting to give dignity to people who need it "
Juan Carrion, meanwhile, as chairman of this group, thanked the City of Cehegín collaboration "for to involve the whole family D'Genes of this place that will serve all the people who are in this situation and thus power orient and integrate them in that way that can make life easier "
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 between relatives and parents of children with rare diseases, and raise awareness of 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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