PARLIAMENTARY WRITTEN QUESTION
Ehlers-Danlos Syndrome (1 March 2023)

England’s first Rare Diseases Action Plan was published on 28 February 2022 and included specific actions to increase awareness of rare diseases, such as Ehlers Danlos Syndromes (EDS), amongst National Health Service staff.

Progress against these actions is detailed in England’s second Rare Diseases Action Plan, published on 28 February 2023. This includes ongoing work by Health Education England (HEE), as part of their Genomics Education Programme, to deliver education and training to the NHS workforce to support awareness, knowledge and management of rare diseases as well as other conditions with a genomic aetiology, including EDS.

England’s 2023 Rare Diseases Action Plan also includes a new commitment for HEE to publish and implement specific strategies for increasing awareness of rare diseases in the nursing, midwifery, pharmacy and primary care workforce over the coming year.