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The "Third National Meeting of rare diseases" will be held this weekend in Totana (23/10/2010)

The Mayor of Totana, José Martínez Andreo and Health Council, Mari Ángeles Palacios, along with the representative of the Government Commission on Health, Eulalia Rodriguez, and representatives from all walks of the Region's health, among others have inaugurated the "Third National Meeting on Rare Diseases" held during the weekend in Totana.

At the meeting, which aims to raise awareness to the citizens of the difficulties found these patients daily, have gathered more than two hundred medical researchers and families of people with such diseases.

The Mayor of Totana, José Martínez Andreo, has welcomed all the participants who have gathered at the Center for Continuing Education of Hemophilia and 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

He also expressed his satisfaction at being able to collaborate from the administration in organizing the event and help these families who are really suffering from this problem 365 days a year.

Martínez Andreo has committed to continue contributing to the initiatives presented by 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.

In addition, the municipal councilor recalled that in the September plenary approved the transfer by the City, some land to carry out the construction of a focal point in the investigation of rare diseases.

For its part, the Minister of Health explained that the staff of the Directorate General of Planning, Health and Pharmaceutical Management and Research and the Public Health and Health Service of Murcia, working on developing a regional protocol Rare Diseases.

Palacios explained that the protocol focuses on "fundamentals" such as early detection, coordination and referral to other specialists, evaluating and monitoring the patient.

Thus, added that "the main objective of this initiative, which comes from the Ministry, is to get a diagnosis as quickly as possible and to address comprehensively the disease to improve the quality of life for patients."

As he recalled the owner of Health, is that it is designing the first phase of the protocol, focusing on aspects of the clinical-care.

Later, in a second phase will address geriatric issues and, as the minister explained, have a "leading role" professionals from educational, associations and federations of Rare Diseases.

Source: Ayuntamiento de Totana

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