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The "First National Conference on Rare Diseases" starts with the participation of about 300 people (25/10/2008)

The Mayor of Totana, José Martínez Andreo, director general of People with Disabilities, Marisol Morente and the president of Rare Diseases Association and other PDD "D'Genes" of Totana, Naca Eulalia Perez de Tudela Cánovas, have been responsible for giving kick off the "First National Meeting on Rare Diseases" which will develop along this weekend, and with the participation of about 300 people.

The opening ceremony of the meeting, which was developed on the Socio-Cultural Center "La Carcel" has also had the presence of Director General of Citizen Services, Chemical Dependency, and Consumption, Juan Manuel Ruiz Ros, President of the Murcia Region CERMI , Joaquín Barberá Bles, the FEDER and vice president of EURORDIS, Rosa Sanchez de Vega García, the director of the Elizabeth Foundation for Research Gemio muscular dystrophy and other rare diseases, Victor Orriaga., and the president of the Real Fundación Victoria Eugenia Deputy Medical & Haematology Department of Hospital Universitario Virgen de la Arrixaca, Manuel Moreno Moreno.

This meeting, held yesterday, with the participation for the first time nationally patients, families and professionals involved in this type of pathology, will be held this afternoon from the center of Continuing Education in Haemophilia The Pond under the motto "United we normalize the situation that determines our social life," which aims to sensitize the public of the difficulties that these patients are daily, explained Naca Pérez de Tudela.

This theme underscores the importance of being united to work for a real social integration of people who suffer every day the consequences of a rare disease, as expressed Naca.

Similarly, Marisol Morente stressed the importance of this association, as a regional reference in Murcia, with the work done "by and for people with rare diseases."

In addition, all speakers agreed on the importance of associations to claim and fight to defend the interests of this group.

For his part, Mayor of Totana stressed the satisfaction and pride that mean for Totana host a national meeting of its kind, bringing together health professionals, relatives of patients and even patients and welcomed the commendable work done by this association in the last eight months since its establishment, an association that is representative of ERDF and EURORDIS member conducting a work that conveys enthusiasm and hope in improving the quality of life of these patients. "

Finally, he appealed to regional and national governments to join forces in search of resources that impact on improving the quality of life and care of patients and their families "and hoped that this forum for" are met scientific, medical and teaching that have promoted this event. "

The president of D'Genes highlighted mainly the objectives to be achieved with this meeting, which is to create a space of coexistence between people who are diagnosed with rare diseases, families and professionals.

In this sense, the president of ERDF announced to be started in the framework of this meeting, a campaign to collect a specific job needs and rights for people with rare disease.

This work will start in this event and will be borne by the company Intersocietal, which works directly with Feder.

That is why, in the context of this conference, the Spanish Federation for Rare Diseases begin to develop the first Declaration of Rights of People Affected by Rare Disorders.

This document, which aims to be the speaker of the affected, will have its starting point in this meeting and will be further developed during the annual campaign to raise awareness of ERDF.

Among the demands that these groups make to the government, Perez said the support for research, the allocation of resources to patients to improve their quality of life, as early care and psychological care as well as family support, and that "can not find direct solutions as treatments or medication."

Following the inauguration, began working officers with experience in Care of Rare Diseases in different autonomous regions and experiences associated with social action and rare diseases in the Socio-Cultural Center "Jail."

The president stressed the professional wealth of this meeting, which involved, among others, Salvador Martinez of the Neuroscience Institute of Alicante, Carlos Casas, Head of Child Neurology of the Arrixaca, and Encarna Guillén, head of the Unit of Medical Genetics, Hospital Arrixaca virgin, "explaining the context of these diseases in the Region", he added.

He highlighted the presence of Pilar Giraldo, of Inherited Metabolic Disease Area (CIBERER) and Manuel Posada, Research Institute for Rare Diseases of the Health Institute Carlos III, explaining the closing conference in projects developed at the Europe for this type of pathology.

The meeting also features the presence of heads of ERDF will speak on experiences developed in other regions, and highlighted the case of Extremadura and Andalusia, where there are specific plans for these pathologies.

During the afternoon, conducted various workshops for patients and their families, and discussions of testimony, and on Sunday 26 will place the closing ceremony.

Source: Ayuntamiento de Totana

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