National kompetencetjeneste for sjaeldne diagnoser - praesentation af den norske model
Engelsk titel: National Advisory Unit on Rare Disorders, the Norwegian model
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Författare:
Werke, Lena Lande
;
Aksnes, Stein Are
Email: lenalw@ous-hf.no
Språk: Dan
Antal referenser: 7
Dokumenttyp:
Översikt
UI-nummer: 16083123
Sammanfattning
The main task of the Norwegian National Advisory Unit on
Rare Disorders (NKSD) is to ensure that people with rare disorders
receive holistic and individually based care. NKSD offers
services, which are not expected to be provided within
the main social- and healthcare systems in Norway. Our vision
is to make rare disorders better known through knowledge
and collaboration.
NKSD consist of National Resource Centres on Rare Disorders
where patients, their families and professionals can
seek help and advice.
The purpose of NKSD is to establish better quality of services
through
* empowering patients and strengthening advocacy
* making rare disorders more visible in today’s society
* ensuring easier access to services
* strengthening networks and collaborations of professionals,
* working towards a more effective use of resources in total
People with a rare disorder outside the groups provided for
by the Resource Centres may contact NKSD for help and advice,
e.g. through our National He lpline for Rare Disorders.