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<p>NHS England commissions a national epidermolysis bullosa (EB) service to provide
diagnosis and assessment of infants, children, adolescents and adults with suspected
or known EB, with treatment and long-term support. NHS England is aware that a number
of innovative treatments for EB are either in trials or being considered by the National
Institute for Health and Care Excellence (NICE). If any of these treatments are given
a positive recommendation by NICE, NHS England will ensure that service provision
is in place to deliver these treatments.</p><p>The Department funds research through
the National Institute for Health and Care Research (NIHR). While the usual practice
of the NIHR is not to ring-fence funds for expenditure on particular topics, the NIHR
welcomes funding applications for research into any aspect of health or care research,
including therapies for rare conditions such as EB. These applications are subject
to peer review and judged in open competition, with awards made on the basis of the
importance of the topic to patients and health and care services, value for money
and scientific quality. In the past 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.</p>
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