Rare diseases are still a struggle andy

Rare diseases are still a struggle and a medical journey.

Burgos, February 27 .- The director of the State Rrence Center for Rare Diseases, Miguel Angel Ruiz, said today that the situation of those affected by these pathologies minority remains a "race to the bottom" to deal with a "fight" that sometimes is a real "health journey."

Before the celebration, tomorrow, the International Day for Rare Diseases, Ruiz explained, craft of golds gold, to that work continues on the "social visibility" of a group that still suffers from "a social rejection" and "discrimination."

The International Day for Rare Diseases, has added, "is a good opportunity to give a wake up call" to society and to all professionals and administrations involved in order to "join forces" and progress in improving socio-health care for those, sto energy credits, affected and their families.

From his office at the State Center, based in Burgos, as highlighted in the social progress, while acknowledging that still not enough, and that patients continue to suffer some rejection.

Within the institutional environment has called for the need to improve coordination in the health system to prevent the rare pathologies, gods and heroes gold, to become concerned "in a race against time and background, sometimes even forced to authentic pilgrimage to different services and specialists. "

The plot is not prepared educational, in its view, to provide adequate social services to affected and therefore must be improved.

Therefore, in general terms, Dr. Ruiz believes the combination of efforts needed to improve the quality of life of this community and also of their families.

She acknowledged, however, that Spain would have taken "significant steps" to be among the European countries that are "spearhead" in the treatment and health and social care for rare diseases.

The most advanced country in this respect is France, although Spain played a "significant role" and has become the fourth nation to have a strategic plan.

The state center, based in Burgos, does not provide diagnosis of the disorders, which corresponds to specialist health facilities, even if it provides health and social care directly to families, caregivers and patients to achieve maximum level of personal development, autonomy and social participation.

Rrral services are also dealing with the tasks of training, technical assistance to the different autonomous communities, and also to public and private entities, and awareness of society, and dealing also to inform and disseminate all data publications and studies related to care for people affected by rare diseases.

Today, this center serves fifty people who are offering services and individualized attention.

Ruiz has indicated that, at the initiative of the Ministry of Health, is made a record with this type of pathologies to know that people that suffer from rare diseases.

So from the Research Institute for Rare Diseases urged for a national registry and the center of Burgos, according to its responsible role in this project, are alreadyregistered some seven hundred people.

7,000 known rare diseases in Spain affecting about three million people across Europe about thirty million.

This type of rare pathologies are very different and often cause severe disability tables and low frequency is usually combined with great ignorance and serious difficulties for treatment. 1010449

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