This category includes programmes or networks from across the UK that carry out rare disease research. They may be primarily funded by government or charitable and not-for-profit organisations and are often delivered in partnership by multiple stakeholders.
- Identifying unmet needs and opportunities in the system, understanding issues
- Influence policy makers based on research outcomes.
- Research and Development (R&D).
- Methodology development, e.g. innovative trial designs suitable for evaluation of rare disease therapies
- Coordinating and delivering clinical trials
- Provide expert opinion to drive strategy of research landscape.
- PPIE and outreach
- Building alliances with other organisational categories
- Building alliances and networks focused on common goals
