Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether his Department has taken steps to support research going into curing (a) Batten Disease and (b) other Neuronal Ceroid Lipofuscinoses.

The Department funds research into rare diseases such as neuronal ceroid lipofuscinoses, including Batten disease, through the National Institute for Health and Care Research (NIHR). Applications for funding are subject to peer review and judged in open competition, with awards made based on 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 awarded £105,000 for a study into Batten disease. In addition, the NIHR has supported the delivery of 10 studies relating to Batten disease or other neuronal ceroid lipofuscinoses via its infrastructure. The UK Rare Diseases Framework also addresses research, with each nation committed to publishing an action plan by the end of 2022.