The Launch of the Rare Cancers Act 2026

On Thursday 5^th March, the Rare Cancers Bill received Royal Assent and officially became the Rare Cancers Act 2026. This is a huge step forward to boosting research, innovation and patient access to treatments for rare cancers, such as pancreatic cancer.

For the Bill and the Act, rare cancers are defined as ‘a cancer that affects more than 1 in 2000 people in the United Kingdom’. As pancreatic cancer is estimated to affect 1 in 55 men and 1 in 59 women in their lifetime, it is classed as a ‘rare cancer’ and is covered by the Bill.

The Rare Cancers Bill (2024-2025) was a Private Member’s Bill introduced in the House of Commons by Scott Arthur MP for Edinburgh South West on 16^th October 2024. Its aim was to encourage more research, investment and clinical trials for rare cancer types.

The Bill received cross-party support, largely because rare cancers collectively account for a large share of cancer deaths in the UK, despite receiving less funding.

The Bill proposed several key measures:

• Duty to promote rare cancer research
• National leadership for rare cancer research
• Improved access to clinical trials
• Review of orphan-drug regulation

Like most UK legislation, the Rare Cancers Bill followed the standard parliamentary process. Once both Houses of Parliament agreed on the final text, the Bill was sent for Royal Assent. This is the final stage in the UK legislative process where the Bill is formally approved by the Monarch, turning it into an Act of Parliament (law). When Royal Assent was granted, the Bill officially became the Rare Cancers Act, turning its proposals into legally binding duties and structures for rare cancer research.

For pancreatic cancer, the Rare Cancers Act could lead to:

• More research funding
• Better access to clinical trials
• Earlier diagnosis tools
• Stronger incentives for new drugs
• Increased policy focus on “less survivable cancers”

The Rare Cancers Bill became the Rare Cancers Act because it combined cross-party support, strong campaigning by charities and alignment with NHS research goals. At Pancreatic Cancer Action, we want to thank all the charities and organisations involved for the collaborative hard work in campaigning for the Bill. The evidence provided showcased that rare cancers receive disproportionately low research funding despite the many deaths they cause, and the lobbying helped to build momentum and public awareness.