The National Institute for Health and Care Excellence (NICE) has published its first quality standard for rare diseases, setting out priorities to improve diagnosis, treatment and care coordination for people living with rare conditions in England and Wales.
The standard outlines eight key areas for improvement, including faster diagnosis and treatment within national waiting time targets, recognition and monitoring of people with undiagnosed conditions, and the provision of a named healthcare professional to coordinate each patient's care.
It also calls for equitable access to recommended treatments and opportunities to participate in clinical research.
More information can be found here.