Written question WQ100412

Prior to the Bill receiving Royal Assent in March 2026, Welsh Government officials held discussions with Department of Health counterparts regarding its potential implications. These discussions supported coordination and alignment across the UK in relation to the objectives set out in the Rare Cancers Bill - now the Rare Cancer Act 2026.

Whilst responsibility for implementation of the Rare Cancers Act rests primarily with the Secretary of State for Health and Social Care, there is an important role for each of the UK nations to ensure that the necessary arrangements are in place to support its effective implementation so that the opportunities and expectations arising from the Act are appropriately reflected within Welsh systems and programmes.

No specific representations have been made to UK Government about the Rare Cancer Act 2026 since royal assent. However, discussions on cross-border impacts for Welsh patients being able to effectively access research trials across the UK (for Cancer and other conditions) are part of regular engagement between Welsh Government officials and UK Government colleagues occurs through established implementation and governance arrangements.

Health and Care Research Wales, which is supported by the Welsh Government, funds a national Health and Care Research Wales Delivery Hub to facilitate the efficient set up of studies so that the opportunity for participants to take part in research studies and clinical trials is available as quickly as possible. The hub also provides a horizon scanning function for all studies open across the UK, particularly if the condition is rare, the NHS will facilitate patients to travel to specialist site.