The National Institute for Health and Care Excellence (NICE) has published a quality standard on rare diseases, which sets out clear expectations for improving the diagnosis, management and treatment of rare conditions across England and Wales.
The quality standard outlines eight priority areas for improvement, seen below:
- Referral for investigation and treatment
- Undiagnosed conditions
- Information provision
- Shared decision making
- Named healthcare professional
- Holistic needs assessment
- Access to treatment
- Clinical research
Please find the full guidance here.
