EDM: CLN2 Batten disease

CLN2 Batten disease

Tabled by Sarah Gibson (Liberal Democrat) 19 signatures

The motion

That this House recognises the immense challenges faced by children and families living with CLN2 Batten disease, a rare and devastating neurodegenerative condition; notes the importance of early diagnosis, personalised and compassionate care, and access to innovative treatments that can extend and improve quality of life; acknowledges the tireless efforts of families, clinicians and the Batten Disease Family Association in supporting affected children and raising awareness; believes that the voices and experiences of patients and carers must be central to decisions about access to therapies for rare diseases; supports investment in social care and respite for families of children with complex health needs; is concerned that, despite an extended period of evidence collection and negotiation; further recognises that only an estimated three to six children are diagnosed with CLN2 Batten disease in the UK each year and that delaying access risks irreversible loss of function in affected children; and calls on the Government, NHS England, the National Institute for Health and Care Excellence, and the manufacturer to engage urgently to agree a sustainable access pathway and to ensure that newly diagnosed children are not denied timely treatment from 1 January 2026.

Signatories (19)