Date:26 February, 2014

Strategy for Rare Diseases

NHS England has today published its statement of intent in response to the UK Strategy for Rare Diseases.  The document places responsibility for meeting NHS England’s commitments under the UK Strategy under the oversight of the Rare Diseases Advisory Group. 

The statement of intent also includes a commitment to including a ‘Rare Disease Annex’ within relevant service specifications.  

The statement of intent is thin on detail.  This will be redressed in the full national implementation plan, which is due to follow. 

The Department of Health is establishing a Rare Diseases Stakeholder Forum to scrutinise the implementation of the UK Strategy in each of the four countries of the UK.