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Presented the "First National Meeting of Families, professionals and people diagnosed with rare diseases" (19/09/2008)

The "First National Meeting of Families, Professionals and Individuals Diagnosed with Rare Diseases, which aims to create spaces for communication and exchange among professionals, families and patients, will be held in Totana 24, 25 and 26 October in Totana.

This meeting, organized by the Association for Rare Disorders and Pervasive Developmental Totana "D'Genes" in collaboration with the City, has been presented this morning by the Mayor of Totana, José Martínez Andreo, municipal officials of the departments involved , Trini Cayuela and John Carrion, and the premonition of the Association, Naca Pérez de Tudela, accompanied by members of the board.

This meeting also has the express support of the Hemophilia Association of the Region of Murcia in the transfer of the use of permanent training center Hemophilia, located in the pond, which will house all the mourners.

Also, the act has the institutional support of the ministries of Health, Labour and Social Policy of the Directorate General of Disability and the city of Totana and the collaboration of the Spanish Federation for Rare Diseases and EURORDIS.

The councilman of Health, Trini Cayuela, expressed his satisfaction and pride to collaborate in organizing this event and help these families "are those who really suffer from this problem 365 days a year."

Thus, stressed the need for concerted efforts to search for resources that have an impact on improving the quality of life and care of patients and their families and called for the defense of the struggle of these people to help in the "preparation and training to address and tackle these diseases. "

For his part, Councillor for Citizen announced the joint motion of the Department of Social Welfare and Health, which will be presented in Parliament this month, which urges the regional government to establish a Medical Genetics Unit Reference

Hospital Virgen de la Arrixaca and a Comprehensive Care Plan for Rare Diseases under the Health Plan of the Autonomous Community of Murcia.

The president of "D'Genes", which expressed appreciation to City Council for their cooperation, appealed to the general public to attend, participate and

share experiences in this conference, where he also "wanted also that this forum will be a speaker to raise awareness about public health issues posed by these diseases."

In addition, this meeting, which will develop workshops, testimonies and various workshops throughout the weekend, will the presence of two researchers in the field and vice president of Eurordis and in turn, president of the Spanish Federation for Rare Diseases FEDER, Rosa Sanchez de Vega.

Thus, from the Association invites anyone who wishes to participate in this meeting presented under the motto "United we normalize the situation that determines our social life" and for that, "D'Genes" will offer free accommodation and full board for people diagnosed with rare disease and two companions.

For his part, Mayor of Totana, congratulated the President of the Association and all its board by "the desire, effort and enthusiasm" inverted when organizing an event of this kind, a reference mark at the regional level nationally and internationally.

He also congratulated the members of this institution for the successful track record in such a short time of existence and inclusion in ERDF and be responsible for carrying out the delegation of Murcia.

Finally, made a commitment to continue contributing to the initiatives presented Syro this partnership and take actions that contribute to improving the quality and life expectancy of patients and their families, calling the investment of study and research of this type diseases, affecting one in 2,000 people.

The deadline to participate in this conference will remain open until 15 October, and people who are interested may conclude the registration will be done Wednesday at the Department of Citizenship, or call us to request information from the phone 696 14 17 08 and 660 002 410 (Naca, president).

Source: Ayuntamiento de Totana. Fotos:

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