Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how patient organisations representing people living with rare conditions will be consulted on the development of new pilots being delivered as part of the UK-US trade agreement.

Implementation work is currently underway to develop further details for each individual pilot. Detail regarding which treatments, including for rare conditions, are included, how each pilot will function, and how stakeholders will be involved are yet to be determined. Groups including the Charity Medicines Access Coalition and the Association of Medical Research Charities have been involved in the development of pilot concepts and will continue to be consulted. These groups collectively represent hundreds of organisations, including those representing people affected by rare conditions.