3690 - Skin: Diseases (Answered)

Margaret Hodge
To ask the Secretary of State for Health, what steps his Department is taking to ensure that NHS staff are aware of the symptoms and treatment of Stevens-Johnson Syndrome and toxic epidermal necrolysis.

George Freeman

There are between 6,000 and 8,000 recognised rare diseases and an estimated 1 in 17 people will be affected by a rare disease at some point in their lifetime. The Government continues to work hard to raise awareness of, and take action on, rare diseases.

In 2013, the Department published the UK Strategy for Rare Diseases. As part of its implementation, the Department has funded the production of two videos on rare diseases, the first from the viewpoint of the patient and their family and the second directed at healthcare professionals. The videos can be viewed on the Department’s website at:


The Deputy Chief Medical Officer for England, Dr Gina Radford, a rare disease champion, raises the profile of rare diseases and their importance in healthcare planning. The Department is also working with Public Health England which is leading the establishment of the first UK Rare Disorders Register. This will eventually register all cases of rare disease in the United Kingdom.

British National Formulary publishes guidance on Stevens Johnson Syndrome, including details of specific genetic testing.