Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what plans the NHS in England has to adopt the definition of an ultra-rare disease as a condition with a prevalence of 1 in 50,000 or less, as used by the Montgomery Review of Access to Medicines in Scotland.
The term ‘ultra-rare disease’ has been used by the National Health Service in England since about 2005 to indicate diseases with a prevalence of about 1 in 100,000 and there are currently no plans to change this definition. It should also be noted that the term ‘ultra-rare’ is only used as a guide and the prime focus is on the services needed by patients, not the rarity of a condition.