Government publishes England’s rare diseases priorities for 2023 6 Mar 2023

The UK government has published a report outlining progress on the Rare Disease Action Plan 2022, as well as details of the priorities of the Rare Disease Framework for 2023. 

 The ‘England Rare Diseases Action Plan 2023’ highlights recent improvements to newborn screening to speed early diagnosis, as well as clinical research by Genomics England that is providing new diagnoses and supporting further care, plus the approval of new treatments. 

 The 2023 plan lists 13 new actions to improve rare disease diagnosis and treatment, along with funding totalling over £800 million to support them. Plans include: increasing data sharing between NHS England, the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) and Genomics England; improving rare disease service commissioning; addressing health inequalities, and encouraging participation in clinical research. 

 Funding includes investments of nearly £790 million into Biomedical Research Centres, and a £12 million UK Rare Disease Research Platform. 

 Read the full report here.