Written questions

Metachromatic Leukodystrophy

Commons · Question 5801 · Tabled 1 Jun 2026 · Department of Health and Social Care · Official record

Answered 9 Jun 2026

Question

Asked by Gregory Stafford

To ask the Secretary of State for Health and Social Care, how many children diagnosed with metachromatic leukodystrophy since the approval of gene therapy treatment have been assessed as ineligible for treatment because diagnosis occurred after symptoms d

Answer

Answered by Preet Kaur Gill, 9 Jun 2026

Libmeldy, the gene therapy treatment for metachromatic leukodystrophy (MLD) has been funded nationally by NHS England since 2022 and is delivered exclusively through the specialist children’s service at Royal Manchester Children’s Hospital. Information on...