This category includes civil services, regulatory and decision makers, government departments and research councils. Organisations within this category are varied and therefore they will not fulfil all of the responsibilities listed here.
- Support researchers and industry in the rare disease research ecosystem.
- Set guidelines and regulatory frameworks based on policy
- Provide funding for research according to direction set by policy makers and/or to address unmet needs and issues.
- Monitor research outputs.
- Influence policy based on research outcomes.
- Set direction and priorities for whole research eco-system, informed by evidence provided by researchers, people living with a rare disease, industry, etc.
- Incorporate rare diseases into social policy and services.
- Secure sustainable access to diagnosis, treatment and care for people with rare diseases.
