Literature DB >> 8658417

[A small-group center. A model trial for activities of a center for rare diseases and syndromes at the National Hospital].

B F Kase1, B Nilsson.   

Abstract

The Centre for Rare Disorders at the National Hospital is a trial project in connection with the Government's Plan of Action for the disabled. The intention is to establish nationwide facilities which in cooperation with local resources can provide both medical, pedagogical and social services for persons with rare disorders and their families. The work at the centre is based on a life span perspective and the goal is improved coping, independence and better quality of life. The centre gathers, adapts and spreads information on 15 rare disorders. Representatives from the user organisations ensure that the users have a strong influence on the management of the centre. It is hoped that systematic evaluation of the centre's activities will give an answer to the Government and to the host hospital as to whether the intentions and goals will be fulfilled or not during the project period.

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Year:  1996        PMID: 8658417

Source DB:  PubMed          Journal:  Tidsskr Nor Laegeforen        ISSN: 0029-2001


  1 in total

1.  Assisting a child with tuberous sclerosis complex (TSC): a qualitative deep analysis of parents' experience and caring needs.

Authors:  Guendalina Graffigna; Caterina Bosio; Isabella Cecchini
Journal:  BMJ Open       Date:  2013-12-06       Impact factor: 2.692

  1 in total

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