Rare Disease Day in Norway
Norwegian Federation of Organisations of Disabled People (FFO) was founded on September 21st 1950, and is a central co-operative body of organisations of disabled people in Norway, including about 30 organizations for people with rare disorders. Fundamental to FFO’s work is its belief in a society based on solidarity – a society that ensures to all the right to freedom, social security and societal participation. FFO envisions a society where disabled people have equal opportunity to take part in all aspects of society, where disabled people are equal in all respects.
The Norwegian Directorate of Health is the country’s competent authority, responsible for technical functions as well as certain administrative roles, coordinates and monitors the services for rare disease patients in Norway.
In Norway tjere are 10 different state-financed national Centres of Expertise (Kompetansesentre) for rare disorders. To date, such services have been established for about 320 diseases, resulting in (in 2011) about 16,000 registered users at the centres. The centres contribute to the process of enabling patients to access the same work, educational and social opportunities as all Norwegians. The centres take up the needs for various forms of support unmet by standard services available. The centres also facilitate the development and dissemination of expertise.
Revised regulation on accreditation/approval of hospitals and national services incl Centres of Expertise for rare disorders is in effect from 01.01.2011: http://www.regjeringen.no/upload/HOD/SHA/forskrift-eng-270911.pdf
The guide for this regulation (new revision is about to come): http://www.helsedirektoratet.no/helse-og-omsorgstjenester/sjeldne-tilstander/kompetansesentre/Documents/Veileder%20til%20Forskrift%20nr.%201706%20-%20engelsk.pdf