Question to the Department of Health and Social Care:

To ask Her Majesty’s Government whether they will publish a report on the work of the Rare Diseases Advisory Group, indicating the extent to which its recommendations have influenced the decisions of the National Institute for Health and Care Excellence and NHS England.

The Rare Diseases Advisory Group (RDAG) was established by NHS England to provide it and the devolved administrations of Scotland, Wales and Northern Ireland with consistent advice on developing and implementing the strategy for rare diseases and highly specialised services. The RDAG is directly accountable to the NHS England Clinical Priorities Advisory Group. The group’s terms of reference state that the agendas and minutes from their meetings are available on the NHS England website. The Department has no plans to publish any further reports on RDAG’s work.

The National Institute for Health and Care Excellence (NICE) develops its guidance independently, based on the available evidence and in consultation with stakeholders. NICE is a full member of RDAG. NHS England is a stakeholder in all NICE’s highly specialised technology guidance and may seek advice from the RDAG in engaging with NICE’s guidance development processes.