Neurofibromatosis
(asked on 13th May 2026) - View Source
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, a) what steps are being taken to inform those living with Neurofibromatosis Type 1 (NF1) that they are entitled to earlier screening for breast cancer, and b) what steps are being taken to improve access to earlier screening for those with NF1.
This Government is committed to improving cancer screening services in line with the National Cancer Plan and as part of the 10-Year Health Plan’s shift from treatment to prevention.
Neurofibromatosis type 1 (NF1) affects individuals differently. An individual’s risk of breast cancer is based on a number of factors. These factors may vary throughout a lifetime which is why individuals are advised to seek advice from their health professionals.
Most, but not all, individuals with NF1 would be considered at moderate risk of breast cancer, which would mean they could be referred to local cancer surveillance programme commissioned via integrated care boards.
National Institute of Health and Care Excellence guidance does not address NF1 specifically but does state that people with certain genetic conditions should be referred through to a geneticist to consider their risk and may qualify for annual breast screening between 40 and 50 years of age.
The NHS website provides information for people living with NF1, available at the following link: