Update 11th July 2025
Delighted to see Dr Scott Arthur’s Rare Cancers Bill pass through third reading in the House of Commons on Friday.
This Bill is a crucial step forward for those living with rare and less common cancers.
Thank You to everyone who contacted their email to garner support – and to all MPs who voted in favour and supported this life-changing Bill.
The work isn’t over yet but we look forward, alongside our community, to supporting it as it progresses through the House of Lords.
Urgent Update 9th July 2025
Ahead of third reading of the Bill on Friday morning, an amendment to the Bill has been tabled. It means that should this amendment be pushed through, it will have to go to a vote.
If 40 MPs do not turn up to the debate (with a minimum 27 MPs to vote in favour for the Bill) then this vitally important Bill will fall. Many, many other Bills have fallen this way. We cannot let this happen.
Therefore we really need your help in asking your MPs not only to attend, but vote in favour of this Bill.
Thank you
Find your MP here: https://members.parliament.uk/FindYourMP
MP letter for you to edit and use: Updated 3rd Reading Letter
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Rare Cancers Bill Update 8th July 2025
Yesterday I had the pleasure and privilege of meeting Scott Arthur MP: and was able to thank him, in person, for his compassionate and inclusive leadership of the Rare Cancers Bill.
It was also an opportunity to talk with charity colleagues and industry representatives on shared goals and next steps.
The Rare Cancers Bill, introduced in October 2024 has now passed the Committee Stage and is currently scheduled to return for its third reading in the House of Commons this Friday 11 July. It is our sincerest hope that it continues to receive comprehensive cross-party support through to an onward journey to the House of Lords, then Royal Assent to become the Rare Cancers Act 2025. (click here to see the Bill’s journey to date)
A note from Dr Scott Arthur MP
“My father-in-law, Ivor Hutchinson, was a dignified, loving and thoughtful man. He died in May 2018, only six months after he was diagnosed with the rare brain cancer, glioblastoma. Sadly, his story is not unusual.
Rare cancers do not attract research on the same level as more common cancers, despite their impact being profoundly felt by many families throughout the UK.
According to a Cancer52 patient survey in 2024, 82% of those with a rare or less common cancer were not offered a clinical trial (1).
More must be done to incentivise and create an environment where research into rare cancers is fostered. Both government and industry are essential to this, and we must have a dedicated focus to tackle this challenge head on.
As part of the Rare Cancers Bill, I have engaged with charities that represent many rare cancers . . .”
The Rare Cancers Bill
The aim of the Bill is to incentivise research and investment into the diagnosis and treatment of rare cancers:
It will achieve this by:
- Appointing a named individual responsible for overseeing the delivery of research into rare cancers
- Placing a duty upon the Government to review the Orphan Drug Regulations, with respect to rare cancers.
- Ensuring that patient data from national cancer registries across the UK is shared within a centralised database (such as the ‘Be Part of Research’ initiative.
- Mandating that this centralised database includes a tailored service for rare cancers: ensuring patients are easily contactable and informed about research, including clinical trials.
We extend a huge thank you to Scott Arthur MP, Minister Ashley Dalton, Dame Siobhan McDonagh, to our charity colleagues on the Less Survivable Cancers Taskforce, and every single person who wrote to their MP asking them to support this Bill.
We would also like to acknowledge and thank the MPs who have supported the Bill so far and hope they continue to do so . . .. alongside everyone who has helped to champion this Bill.
This collaborative approach and action has brought us to this point — and we hope that the momentum and support achieved and received so far continues, to enable and facilitate a meaningful and successful outcome.
On Friday 11ᵗʰ July, as mentioned above, the Bill receives its third reading in the Commons and then, barring an extraordinary turn of events, it will cross for scrutiny in the House of Lords.
We want as many members of that House to be as well informed as possible about the Bill and what it means for those whose lives it could transform.
Your help in achieving this cannot be under-estimated – share your story – use your contacts – email your MP and/or if you know a member of the House of Lords ask them to support this vital, potentially life-changing Bill.
#RareCancersBill2025
Find your MP here: https://members.parliament.uk/FindYourMP
MP letter for you to edit and use: MP letter template
- Cancer 52 A Fair Chance: Reducing Health Inequalities for People with Rare and Less Common Cancers https://www.cancer52.org.uk/single-post/cancer52-health-inequalities-report