2 Strategy Follow-Up

The Norwegian Government’s objectives:

• that user involvement is facilitated at the individual, service and system levels
• that people with rare diagnoses and conditions will receive equal and fast access to high-quality, multidisciplinary assessments, diagnostics and patient care
• that people with rare diagnoses and conditions receive good, comprehensive patient pathways and coordinated services with a life course approach
• that patients are given equal access to a multidisciplinary evaluation and assessment of cognitive, physical and psychosocial functions with a focus on mastery, activity and participation
• that research and knowledge advancements in the area of rare disorders and diagnoses are strengthened through national and international research and network cooperation
• that knowledge of assessments, diagnostics, treatment and follow-up of rare diseases and conditions are strengthened in healthcare services

The Norwegian Government will implement the following initiatives to achieve the above-mentioned objectives:

1. Regional health authorities shall ensure that the infrastructure for genetic testing includes rare diagnoses.

This initiative will contribute towards better diagnostics and treatment, as well as increased participation in clinical studies.

2. The Norwegian Directorate of Health shall, in cooperation with regional health authorities, ensure that we have a dynamic system for including new diseases in neonatal screening.

This initiative will contribute towards better diagnostics, assessments and treatment, as well as research.

3. Regional health authorities are commissioned, in cooperation with user organisations and other relevant actors, to evaluate how equal and fast access to highly specialised assessments, diagnostics and treatment can best be ensured by specialist health services through national and possibly regional services.

This initiative will contribute towards better and faster diagnostics, treatment and follow-up of patients with rare diagnoses and disorders, and to the dissemination of knowledge and expertise among healthcare personnel and services. It is assumed that the national competence services for rare diagnoses will be discontinued as national competence centres, but that the activities and professional expertise will be maintained and developed. The evaluation must determine the opportunities for better diagnostics, treatment and follow-up from a life course perspective, as well as the development of competence through restructuring and mandates. Highly specialised assessments and competence development should be viewed in the context of Norwegian participation in the ERN, and the establishment of national professional networks associated with this.

4. Regional health authorities will facilitate increased Norwegian participation in the European Reference Networks (ERN) and establish formalised Norwegian professional networks in areas where Norway is represented.

This initiative will contribute towards faster and more accurate diagnostics, as well as increased cooperation on research and dissemination of knowledge.

5. The Norwegian Directorate of Health is commissioned to establish a national forum for participants within and around the work of the European Reference Network, including the participation of user organisations.

This initiative entails the establishment of a forum as an arena for sharing information about experiences and the status of the efforts to establish and operate the various networks and associated quality registries. This initiative will contribute towards increased coordination between the various networks, and between the networks and the regional health authorities, the Norwegian Directorate of Health, and the Ministry of Health and Care Services in their work with the ERN.

6. The Norwegian Directorate of eHealth is commissioned, in cooperation with the Norwegian Directorate of Health and the regional health authorities, to evaluate whether the current coding system and ongoing initiatives meet the needs of rare diagnoses, including ICD-11 and ORPHA codes.

This initiative will contribute towards improving and strengthening diagnostics, research and knowledge development.

7. Regional health authorities are commissioned to evaluate and, where appropriate, establish a national registry for rare disorders based on the National Advisory Unit on Rare Disorders established at Oslo University Hospital Trust.

This initiative will contribute towards improving and strengthening diagnostics, research and knowledge development.

8. The Norwegian Directorate of Health is commissioned, in cooperation with user organisations, the Norwegian Association of Local and Regional Authorities (KS) and regional health authorities, to evaluate how service user needs for coping and mastery from a life course perspective can be better addressed for patients with rare diagnoses and disorders.

This work must be viewed in the context of ongoing assessments of learning and mastery services for patients. This initiative will contribute towards more comprehensive assessments, evaluations and follow-up of patients with rare diagnoses and disorders from a life course perspective.

9. The Norwegian Directorate of Health is commissioned, in cooperation with relevant actors and professional communities, to assess and prioritise Norway’s participation in various international forums, and to propose appropriate support from and participation of users, professional communities and health authorities.

This initiative will contribute towards increased research, knowledge and competence development, as well as better diagnostics and treatment.

10. The health sector, education sector, specialist health services and Statped are commissioned with evaluating how cooperation can be improved with the aim of achieving a more coordinated range of services.

This initiative is a follow-up of the Report to the Parliament (White Paper) 6 Early intervention and inclusive education in kindergartens, schools and out-of-school-hours care.