Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps the NHS is taking to ensure that women with Neurofibromatosis type 1 are informed of their increased risk of breast cancer at an early age.

The NHS Breast Screening Programme invites women between the ages of 50 and 71 years old to a screening every three years. However, women with an increased risk of breast cancer, such as those with neurofibromatosis type 1, are invited for screening from 40 years old.

Any woman who has neurofibromatosis type 1 and who hasn’t been referred for breast screening at 40 years old, or who has noticed changes to their breasts, should speak to their general practitioner.

The National Health Service website, available to the public and professionals, has information on neurofibromatosis and the increased risk of breast cancer, and advises breast screening from 40 years old.

In 2023, the England Rare Diseases Action Plan committed to improving the registration of national data for exemplar rare genetic conditions which cause an inherited predisposition to cancer, building on the success of the national Lynch syndrome registry.