Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the resources available to the UK National Screening Committee to (a) adequately engage with the rare disease stakeholder community and (b) ensure it takes account of the specific considerations relating to rare diseases.

The UK National Screening Committee (UK NSC) has dedicated experienced members of the Secretariat to increased and sustained stakeholder engagement, who have been especially focused on rare diseases. They meet regularly with interested organisations to keep them informed of the ongoing work of the UK NSC. The Departmental screening team also attends the Rare Diseases Framework Delivery group meetings where discussions with stakeholders can address specific issues.