Health advocates research into rare diseases as a priority line of biomedical regional strategy

The Minister Encarna Guillen speaks at the European Organization for Rare Diseases (EURORDIS) on the regional plan of these pathologies and their "comprehensive and inclusive" character

The Minister of Health, Encarna Guillen defended today in Barcelona that the Region of Murcia "can be a leader in research on rare diseases," because for the regional government "are a priority line within the Regional Strategy for biomedical research."

Guillen said that the above strategy will be part of the Science, Technology and Innovation of the Region of Murcia, he did not rule out "incorporate patronage" as a way of financing and considered "fundamental" to maximize the resources of the European Union.

The Minister of Health participates in the day that the European Organization for Rare Diseases (EURORDIS) held today in Barcelona, ​​where explained the details of Regional Plan for Rare Diseases, which underlined its "comprehensive and inclusive" character.

In this regard, he said that the plan has a director team, which coordinates an interdepartmental commission, which have emerged different working groups to address the ten strategic areas of the same: information on rare diseases, prevention and early detection, health care , therapeutic resources, geriatric care, social services, education, professional training, research, monitoring and evaluation.

During his speech he stressed that "they are considering transversal actions", with the aim of a "comprehensive approach" to the needs of patients with rare diseases and their families "in the clinical-care, educational and social fields".

He also stressed the participation of social organizations of rare diseases "as expert patients" since said that it is drawing up an "open to dialogue and cooperation plan with the involvement of those affected that guide us and help in the process of decision making".

Among some of the issues that will be included in the plan said a new healthcare organization to ensure care for patients and families through a figure like the nurse case manager "that will help and facilitate transit, control and continuity within the health care organization. "

He also referred to the Regional Palliative Care Plan, which will integrate pediatric care with a new model of regional coverage, specific training teams assessing the degree of dependence for proper graduation and socio-health care in the school setting, whose pilot project for patient care school age in the school itself has already begun.

Fifty research

Encarna Guillen spoke about the investigation "as an essential tool for progress and knowledge" and referred to the more than 20 researchers working in fifty projects related to rare diseases.

Of these, seven are projects funded with 700,000 euros by the Institute of Health Carlos III, 17 clinical studies and 26 clinical research studies that address, among others, Hypohidrotic ectodermal dysplasia, arrhythmogenic cardiomyopathy, ALS, cystic fibrosis, Fabry, hemophilia , Crohn, retinitis, primary thrombocytopenia and mucopolysaccharidosis.

The Minister recognized the value of recently awarded by the Spanish federation of these pathologies and whose first monograph, with data up to December 31, 2013, was just released Regional Information System on Rare Diseases (SIER).

According to the study, 65,125 people in the region suffering from a rare disease, 4.4 percent of the regional population, the prevalence rate stands at 515.2 cases per 10,000 inhabitants, without significant differences between women and men .

Source: CARM


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