Portal de Totana
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It is located at San Cristobal de Totana and the place has been given by the Commercial and Agricultural Circle Totana
The Minister of Health, María Ángeles Palacios, and the Mayor of Totana, María Isabel Sánchez, today inaugurated the new Center Multidisciplinary D'Genes "Celia Pérez Carrión de Tudela 'Association that will serve comprehensive care to patients with rare diseases of the Region of Murcia.
The home is located in a downtown offices of the San Cristobal street of this town and has been assigned by the Commercial and Agricultural Circle Totana, given that I had this association of regional street Tight had become too small for the many offering services in the coming years.
The new infrastructure aims to provide an improved therapeutic for those affected by a rare disease in the Region of Murcia response.
In it, continue the service portfolio to date has been developing in the Association of Rare Diseases "D'Genes" and expanded with a new service over Multisensory Stimulation will.
The center is named after the daughter of current president of partnerships and D'Genes affected family and lipodystrophy (AELIP), Naca Pérez de Tudela, and the president of the Spanish Federation for Rare Diseases (FEDER), Juan Carrion , today February 27 had served 10 years.
The event also gave the appointment of Associate ERDF in Murcia, embodies Guillén, regional deputies, deans of the faculties of Medicine and Social Work at the University of Murcia, the Dean of the Faculty of Nursing at the UCAM, municipal authorities and representatives of local and regional socio tissue.
Today, the center serves 107 people, including children and adults, representing 70 different rare diseases and provides a portfolio of services consolidated physiotherapy, social services, psychological services, reflexology, cognitive stimulation, speech therapy, hydrotherapy, among other disciplines.
The association "D'Genes" consolidated Information Service and Guidance for families and people with a rare disease that has served more than 300 people in 2013.
It has also created an international training framework through the completion of the meeting of families and the Congress of rare diseases that we celebrate each fall in recent years.
Totana has become standard in care for people with a rare disease not only in the region, but also nationally and internationally.
This circumstance has been achieved thanks to the extraordinary work of the Association for Rare Diseases "D'Genes", the Association of Family and Affected Lipodystrophies (AELIP) and FEDER delegation in Murcia.
The couple's daughter Carrion Perez de Tudela died on March 31, 2012 and since then his parents have not abandoned the cause of research and socio allowing aid to families and rare disease patients.
Just a month after their loss, they founded, along with members of the board D'Genes and friends the new Association of Family and Affected Lipodystrophies (AELIP), an institution internationally in just two years of life has gotten be a leader in Spain, Europe and Latin America.
The result of their efforts has been able to consolidate and recognize the date of March 31 as the World Day Lipodystrophies.
Totana is standard in care for people with a rare disease not only in the region, but also nationally and internationally.
And that has been achieved thanks to the extraordinary work of the Association of rare diseases "D'Genes", Association of Family and lipodystrophy affected AELIP and delegation of ERDF in Murcia.
View report:
http://www.totana.com/reportajes/2014/02/centro-multidisciplinar-celia-carrion-perez-de-tudela/
Source: D´Genes. Foto: Totana.com
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