The Rare Cancers Bill has now become law, marking an important milestone for people affected by rare and less common cancers across the UK, including liver cancer. The legislation aims to incentivise greater research and investment into the treatment of rare cancers, helping address long-standing gaps in diagnosis, treatment options and outcomes.
Rare cancers collectively affect a significant proportion of people diagnosed with cancer each year. Yet historically they have received less research funding and attention, meaning patients often face delays in diagnosis, limited treatment options and fewer opportunities to take part in clinical trials. This reflects findings from recent research by Cancer52, which shows that the 47% of patients diagnosed with a rare or less common cancer (defined as cancers outside of breast, prostate, bowel and lung cancers) account for a disproportionate 55% of cancer deaths.
By strengthening the focus on rare cancers through improved research coordination, better data sharing and increased clinical trial opportunities, the Act could help accelerate the development of new treatments and improve outcomes for patients.
What the Rare Cancers Act will do
The Rare Cancers Act aims to increase research into rare cancers and improve access to clinical trials for patients across the UK.
Key measures within the legislation include:
- Encouraging and facilitating greater research into rare cancers
- Improving the identification of patients who may be eligible for clinical trials
- Creating the role of a national cancer speciality lead for rare cancers to promote and provide expert advice on rare cancer research
- Strengthening national leadership and coordination in rare cancer research
- Reviewing regulations around orphan medicines, which are treatments developed for rare conditions
By helping researchers connect more easily with patients and improving how data is used, the Act could help remove some of the barriers that have slowed progress for many rare cancers.
Why this matters for liver cancer
For people affected by rare and less common cancers including liver cancer, this represents a significant step forward.
Too often, patients facing rarer cancers experience later diagnosis, fewer treatment options and poorer outcomes. This legislation creates an important opportunity to strengthen focus, improve data, and drive greater equity across cancer research, diagnosis and care.
At the British Liver Trust, we know that liver cancer remains one of the fastest-rising causes of cancer death in the UK. Despite this, outcomes remain poor, with many people diagnosed at a late stage when treatment options are more limited.
Pamela Healy, Chief Executive of the British Liver Trust, said:
“Liver cancer has one of the lowest survival rates of all cancers in the UK and has long suffered from a chronic lack of awareness, research investment and funding. Too many people affected by liver cancer and other rare cancers are diagnosed late and face limited treatment options as a result.
“The Rare Cancers Act is an important step towards addressing this imbalance by encouraging greater research and investment where it is most needed.”
A moment of opportunity for cancer care
The Rare Cancers Act comes at a time when the UK is setting ambitious goals for improving cancer outcomes.
The forthcoming National Cancer Plan includes the ambition that by 2035, three in four people diagnosed with cancer will survive for at least five years or live well with cancer.
Together, these developments represent a generational opportunity to transform outcomes for people affected by cancer. However, achieving this ambition will require a sustained focus on those cancers that have historically been under-represented in research and policy.
Turning progress into action
We thank parliamentarians from across the House, campaigners and patient advocates who have worked tirelessly to bring this legislation forward.
The focus must now turn to delivery — ensuring the commitments made through the Rare Cancers Act translate into meaningful change for patients.
For people affected by liver cancer and other rare cancers, this means improving early diagnosis, expanding access to clinical trials, and accelerating research that leads to better treatments and outcomes.
The British Liver Trust will continue working with policymakers, clinicians and the wider cancer community to ensure that people affected by liver cancer benefit from the opportunities this legislation creates.