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The Department of Health raised a motion in January to support the full specially and to mark the World Day of Rare Diseases on 29 February, people with a rare disease and their families in relation to the achieving adequate attention to their needs

The Councillor for Health, Eulalia Sandoval, recalled that rare or uncommon (about seven thousand identified) and usually serious, chronic and disabling, affecting a large group of population-6% y8% - requiring prolonged specialized care and especially considering that 50% of these people die before age 30 or that 35% of deaths of children under one year are due to rare diseases.

In the case of the Region of Murcia, in the words of the mayor, rare diseases are a health problem of first order and in other regions of south-east Spain.

It is estimated that more than 100.00 Murcia affected by them, arising annually more than 500 cases of newborns with congenital anomalies / year from among the more than 18,000 births.

The causes are mainly due to lack of knowledge and information on these diseases that causes uncoordinated and unstructured approach within the NHS.

In this way, according to the socio Needs Study of rare diseases and their Families (Study seriously) almost half of those affected have had to travel in the last two years outside the province for diagnosis or treatment.

And is that the average for a diagnosis is 5 years, although 20% of households over 10 years.

This means that most families with rare diseases are daily pilgrimage by the health system in search of answers and resources that exist but are not centralized or coordinated.

In view of this, as stated in the proposal of Councillor for Health, and to safeguard the lives of people with rare diseases, it is therefore urgent need to develop measures that go predominantly to improve and develop health and social model and based educational resource optimization according to the current economic recession and an integral, interdisciplinary and coordinated.

With these measures, according to Sandoval, it becomes clear commitment and closeness of management and public authorities with the group of people affected by a rare disease and their families in order to provide an adequate response to the needs and problems they present.

Source: Ayuntamiento de Totana