Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what funding he is providing for (a) research into and (b) treatment for epidermolysis bullosa on the NHS.

The Department funds research into rare diseases such as epidermolysis bullosa (EB) through the National Institute for Health and Care Research (NIHR). In the last five years, the NIHR has funded two studies into EB with a total award value of £3,022,759 and supported the delivery of over 25 studies via the NIHR’s infrastructure.

NHS England commissions a national EB service to provide diagnosis and assessment of infants, children, adolescents and adults with suspected or known EB, with treatment and long-term support. The service is commissioned from four providers with a total value of £4.4 million.

NHS England is aware that a number of innovative treatments for EB are either in trials or being considered by National Institute for Health and Care Excellence (NICE). If any treatments are recommended for use in the National Health Service by NICE, NHS England will ensure that service provision is in place to deliver these treatments.