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Valcárcel highlights the Government's collaboration with associations of Rare Diseases to advance research (26/10/2012)

He claims that "Totana has become a national reference in the recognition and involvement of the whole society in the processing and dissemination of these diseases"

The Health Plan of the Community of Murcia has included new diagnostic measures and care for these diseases

The president of the Community, Ramón Luis Valcárcel, today stressed the importance of collaboration between medical institutions and associations of rare diseases, to advance research and treatment of these cases.

The prime minister opened today in Murcia Totana the V National Congress of Rare Diseases, which was attended by the Minister of Health, Social Services and Equality, Ana Mato.

Valcarcel said that this patient is the one with "greater difficulties in the world of health and in the field of pathology."

This, he added, "for a variety of conditions that are characterized by their low prevalence in the population and significantly reduce life expectancy and quality of life."

Also, the president said "the town of Totana has become a national reference in the work to achieve greater recognition and involvement of the whole society in the processing and dissemination of these diseases."

In this sense, Valcarcel said that this recognition is thanks to the work of associations like D'Genes, born in Totana, and the Spanish Federation for Rare Diseases (ERDF), which have managed to visualize the need for these cases are treated as necessary.

She stated that "the commitment of health institutions is becoming more and therefore have undertaken new initiatives, such as those collected by the Autonomous Region in its current Health Plan, a document that not only included new diagnostic measures and care, but which raised further the creation of a Protocol for Rare Diseases in the Region of Murcia. "

Moreover, the Prime Minister Murcia considered "fundamental" role of the associations to be able to recognize these diseases and thus pave the way for those who need information or support.

"The partnerships help to break taboos as uncertainty or lack of information does not lead to patients and their families to a situation of greater distress," he said.

The Health Plan 2015 includes a performance area on rare disease, along with other relevant ailments like cancer or diabetes, assuming that these conditions require special treatment by the health system.

The rates are highest in the group of endocrine, metabolic and immunity, nervous system diseases, blood diseases and digestive system diseases.

Source: CARM

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UNE-EN ISO 9001:2000 - ER-0131/2006 Región de Murcia
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