In this blog in the BMJ, Michelle Conway gives an insight into the challenging reality of living with a rare disease and implications for nursing practice and policy.
The new UK Rare Diseases Framework was published on the 9th January 2021. It provides a commitment from the four nations of the UK to develop action plans to improve the care of patients suffering from rare conditions through four priority areas, including better coordination of care. Increasing the professional infrastructure within the NHS for Rare Diseases will be essential to improving coordination of care and Rare Disease Nurse Specialists may offer the key to success...
