Background

In 2009, the EU Commission recommended (1) that member states should establish plans and strategies for the assessment and treatment of rare diseases to ensure that patients with these conditions would have access to high-quality healthcare services. As an alternative to its own strategy, member states were encouraged to develop measures for rare diseases as a part of other healthcare strategies and healthcare legislation.

Norway has thus far not had a its own strategy for patients with rare diseases. However, it has implemented various measures to ensure that all patients receive satisfactory services from both specialist health services and municipal health and care services. Based on both medical advancements and patient needs, specialist health services have established new clinics, departments and units to provide specialist assessments, diagnostics and treatment. Both primary and specialist health services offer habilitation and rehabilitation and have developed various programs to ensure that patients with rare diseases and conditions are able to obtain the help they need. In several fields, individual services have been developed in cooperation with agencies such as the Norwegian Labour and Welfare Administration (NAV) and the Statped state agency for special education services.

Despite this, a number of patients and service users, family members, user organisations and health professionals believe that many of the established services and programmes do not function well enough, or do not adequately meet the needs of people with rare diseases and conditions. This strategy will contribute towards targeted efforts to ensure that such services are improved.