To ask the Secretary of State for Health and Social Care, if he will hold meetings with families of children with ceroid lipofuscinosis type 2 disease on the availability of Brineura on the NHS.
12 February 2019
The Department has no plans currently. The National Institute for Health and Care Excellence is currently developing guidance on Brineura (Cerliponase alfa) for treating neuronal ceroid lipofuscinosis type 2 under the highly specialised technology programme. Further information can be found at the following link: