Rare Cancers Act 2026

A Private Member’s Bill, nominated by Labour MP for Edinburgh South West, Dr Scott Arthur and supported by many of our member charities, has officially become law!

The Rare Cancers Act 2026 will prioritise long overlooked aspects of research, and has the potential to transform outcomes for those affected by rare and less common cancers. This marks another important milestone in the journey toward strengthening leadership, visibility and coordinated action for rare and less common cancers across the UK.

Following Royal Ascent, the Bill is now enshrined into law and will represent a powerful opportunity with its three low-cost, high-impact measures:

1. Appointing a named individual responsible for overseeing the delivery of research into rare cancer treatments

2. Placing a duty on the government to review the Orphan Drug Regulations, with respect to rare cancer treatments

3. Ensuring that patients can be easily contacted about relevant research and clinical trials, thereby improving access to trials and the quality of trials in the UK

These measures have the potential to unlock existing systems and enable them to work better for those with rare cancers through incentivising research and better connecting data. Cancer52 look forward to seeing this progress continue and to working with partners across the community to help ensure those affected by rare and less common cancers are not left behind.