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Document Typology: Newspaper / Magazine article
Methodology addressed by the publication:
Title of document: Rare diseases: chronic diseases that require a new approach to public health
Name of author(s): A. Avellaneda1-2, M. Izquierdo1-3, J. Torrent-Farnell4, J.R. Ramón1
Name of publisher: An. Sist. Sanit. Navar. 2007, Vol. 30, Nº 2, mayo-agosto
Language of the publication: Spanish
Language of the review: English
"The concept of Rare Diseases is relatively new. They are those processes “…that can be mortal or to cause a chronic weakening of the patient and who, due to its little prevalence, require combined efforts to treat them. For indicative purposes, a little prevalence is considered when is lesser than 5 cases per 10,000 people in the Community”. The existence of these diseases is closely tied with orphan drugs, meaning all drugs, prosthesis, biological agents or dietetic preparations destined to the treatment of a Rare Disease. Besides, it is necessary to add two factors more: 1. The Primary Attention physicians do not feel very motivated in their knowledge and 2.
These diseases need a complex sociosanitary attention, habitually more expensive than chronic diseases. By all exposed the Rare Diseases appear like a universe that requires a new sociosanitary approach from the health system."
Reviewer's comments on the document:
A new approach based on both social and health care issues is needed in relation with rare diseases.
Those diseases are not common and it is very important to develop a new attention system that will have into account questions as solitude or the absence of proper drugs to treat the sympthoms.
The problem is that when it is so considered by different care proffessional the reality is that socio-sanitary attention only takes place in home care attention. There the attention of doctors and nurses is coordinated with the attention provided by social workers. All of them try to improve the quality of life of the patients and to integrate their activities.
Where to find it:

Anales del Sistema Sanitario Navaro 2007, Vol. 30, Nº 2, mayo-agosto

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