The Rare Cancers Bill: what it means for children and young people
On Friday 11 July, the Rare Cancers Bill passed its third reading in the House of Commons.
Despite 47% of cancers counting as rare, or less common (1), there are often barriers to clinical research. In fact, a survey from Cancer52 found 82% of those with a rare and less common cancer were not offered a clinical trial. (2)
A Bill (a suggestion for a new law) proposed to UK Parliament called the Rare Cancers Bill aims to make it easier and more attractive for research into rarer cancers to happen.
Children and young people are more likely to be diagnosed with cancers that are rare in the general population and we’re proud to support this Bill alongside over 30 charities.
How did the Bill come about?
Each year, MPs get the chance to put their name into a ballot (like a lottery) to put forward a ‘Private Members Bill’ where they can try and change the law on a topic of their choice.
Dr Scott Arthur MP was selected through this lottery and after speaking with those affected by rare cancers, along with his personal family experience following his father-in-law’s glioblastoma diagnosis, decided to take action on research into rare cancers.
This Bill has been supported by the Less Survivable Cancers Taskforce and other charities including Pancreatic Cancer UK, The Brain Tumour Charity and Brain Tumour research. It has shown the impact of partnership working between MPs, the charity sector and people with lived experience to create lasting positive change.
What is a rare cancer?
In this Bill a rare cancer means a cancer that affects fewer than 1 in 2000 people in the UK.
What’s in the Bill?
The Bill has three main objectives to help improve research into rarer cancers.
- Named leadership – The Bill creates a National Speciality Lead for Rare Cancers in health research, ensuring there is a single specialised lead in government for this issue
- Improved research access – It makes it easier for researchers to contact patients so they can find trial participants
- Orphan drugs review – It compels the government to review its regulations to increase drug development for rare cancers, such as repurposing existing medications
Why is this important?
This Bill will make it easier to conduct research into rare and less common cancers which often affect children and young people. With our friends at CCLG, The Children and Young People’s Cancer Association, we’ve been calling for a Cancer Plan that fully addresses the experience and outcomes of children and young people, including world class treatment and research. We hope the Rare Cancers Bill, combined with the upcoming Cancer Plan for England could transform the future of research and treatment for children and young people.
What happens next?
The Bill must now pass through the House of Lords before it becomes law and implemented. As a charity sector, alongside MPs, and with the support of UK Government, we’ve shown the power we have when we work together to create positive change. By working together, we have the expertise and ability to drive real, lasting change to make sure nobody facing a rare or less common cancer, including children and young people, are be left behind.
How does this affect Wales, Scotland and Northern Ireland?
Different parts of the Bill will apply differently in each nation of the UK. The orphan drugs review and the creation of a National Speciality Lead for Rare Cancers would apply to England and Wales only. The rest of the Bill will apply to all of the UK – England, Wales, Scotland and Northern Ireland. (3)
Posted on Friday 11 July 2025