Rare Diseases

(asked on 14th March 2018) - View Source

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.


Answered by
Steve Brine Portrait
Steve Brine
This question was answered on 21st March 2018

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.

Reticulating Splines