Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what estimate he has made of the number of babies born with rare diseases in the first half of (a) 2025 and (b) 2024.

Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases. Digital data and technology are an underpinning theme of the UK Rare Diseases Framework. The National Disease Registration Service (NDRS) is part of NHS England and manages two disease registration services, including the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS). The NCARDRS records those people with congenital abnormalities and rare diseases across the whole of England. Further information on the NDRS and the NCARDRS is available, respectively, at the following two links:

https://digital.nhs.uk/ndrs

https://digital.nhs.uk/ndrs/about/ncardrs

Currently, there is no single rare disease registry. The NDRS can access information from the Newborn screening programme, which enables early identification, referral, and treatment of babies with nine rare but serious conditions. The NDRS also approaches services for access to patient data for other rare conditions, but this is not blanket coverage at this stage. There are a number of rare diseases registries, some funded via NHS England, and some via industry or charities. Due to this, NDRS records would not be a full picture of everyone born with a rare disease.