A small-group center. A model trial for activities of a center for rare diseases and syndromes at the National Hospital
Kase, B.F.; Nilsson, B.
Tidsskrift for den Norske Laegeforening Tidsskrift for Praktisk Medicin Ny Raekke 116(11): 1340-1344
1996
ISSN/ISBN: 0029-2001 PMID: 8658417 Document Number: 455349
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.