The Rare Cancers Act is now law
The Rare Cancers Bill has received Royal Assent from The King, becoming law – it is now the Rare Cancers Act 2026.
The Rare Cancers Bill, which was launched as a Private Member’s Bill by Dr Scott Arthur MP in October 2024, completed its passage through The House of Commons and The House of Lords before being signed into law by The King on 5 March 2026. The legislation aims to incentivise research and investment into the treatment of rare cancers and enable more patients to access innovative treatments in clinical trials.
Research by Cancer52 shows that in the UK, 47% of all cancer diagnoses are rare or less common cancers (defined as cancers other than prostate, breast, bowel and lung), but they account for 55% of all cancer deaths.
According to the Rare Cancers Act, the definition of a rare cancer is “a cancer that affects not more than 1 in 2,000 people in the United Kingdom” – this includes cholangiocarcinoma (bile duct cancer). The definition within the Rare Cancers Act was chosen to be as inclusive of rare and less common cancers as possible, which is why it differs from the definition according to the Surveillance of Rare Cancers in Europe (RARECARE) which describes a rare cancer as affecting fewer than 6 per 100,000 people per year.
What will the Rare Cancers Act do?
The Rare Cancers Act aims to improve research, data collection, and access to clinical trials for patients with rare cancers across the UK. It has three key parts:
1. Review regulations of treatments for rare diseases (orphan drugs)
This part of the Act is intended to make sure that UK regulations for orphan drugs provide a competitive landscape relative to other countries, incentivising companies to bring treatments here as soon as possible.
How could this impact people diagnosed with cholangiocarcinoma?
Due to the number of cholangiocarcinoma cases, many potential new treatments for the disease would be classed as orphan drugs. A review of orphan drug regulations could help avoid access to innovative medicines being delayed or prevented for patients in the UK.
2. Appoint a National Specialty Lead for Rare Cancers
This part of the Act is intended to strengthen national leadership and coordination of research into rare cancers.
How could this impact people diagnosed with cholangiocarcinoma?
The National Specialty Lead for Rare Cancers will be responsible for working with patient communities to encourage and facilitate more research. Charities like AMMF could work with this designated person to address barriers preventing research into cholangiocarcinoma.
3. Improve how eligible patients are identified and told about clinical trial opportunities
This part of the Act is focussed on helping patients with rare cancers to learn about clinical trial opportunities that may be relevant to them at the right time in their care.
How could this impact people diagnosed with cholangiocarcinoma?
Not all healthcare professionals are equally knowledgeable about active clinical trials for cholangiocarcinoma. This means that some patients may miss opportunities to access new treatments that could help them. By making it easier to connect people diagnosed with cholangiocarcinoma with trials, it will improve fairness and may encourage investment in research because recruitment becomes easier.
AMMF’s Reaction
Helen Morement, CEO and Founder of AMMF, said:
“AMMF is delighted that the Rare Cancers Bill has received Royal Assent and is now law. This is an important step forward for people affected by rare cancers.
“Since its foundation AMMF has called for rare cancers, including cholangiocarcinoma, to receive the same attention and urgency as common cancers. For too long, patients with cholangiocarcinoma have been left behind, receiving less research investment and fewer treatment options.
“The Rare Cancers Act can help to narrow the imbalance compared with the more common cancers by encouraging more research and supporting patients to access innovative, life-extending treatments.
“AMMF is ready to play our part working alongside government to ensure the Rare Cancers Act is the foundation for meaningful progress for our community.”
Acknowledgements
We are extremely grateful to Dr Scott Arthur MP for choosing this important topic for his Private Member’s Bill and for his leadership in supporting it through the parliamentary process. Between 2010 and 2024, fewer than 1-in-20 Private Member’s Bills received Royal Assent, so this has been a significant achievement.
We would also like to thank all AMMF’s supporters and colleagues in other cancer charities who have encouraged MPs to support the Bill, especially when it was in jeopardy.
