Hello everyone,
There will be significant announcements in the early months of 2026 that could really impact the UK brain tumour research landscape.
These include the launch of the National Cancer Plan, a research funding update and progress with the Rare Cancers Bill but what follows these announcements is vital so that optimism and positive words are followed by plans, structure and impact.
That is why we see 2026 as a year of implementation and implementation was the focus of an event we joined this week.
Cameron Miller (The Brain Tumour Charity), Scott Arthur MP, Georgina Maynard (Brain Cancer Justice) and Hugh Adams
Hosted by Prospect Magazine and delivered by our friends at H/Advisers Cicero, it was titled “Driving Policy Forward: Implementing the Rare Cancers Bill”.
The Rare Cancers Bill was introduced in the 2024-25 Private Members’ Bill ballot by Scott Arthur MP and has since received extensive cross-party and Government support for its proposals.
As the Bill edges closer to Royal Assent, the event convened charities, industry, patient advocates, system leaders and policy experts to discuss next steps for implementation of the Bill’s proposals with a focus on three key questions:
- What should we expect from a named lead responsible for advancing rare cancer research and what qualities should they bring to the role?
- What barriers prevent patient data from cancer registries being shared with the ‘Be Part of Research’ Registry, and how can we create a tailored service for rare cancers?
- Where should we begin in reviewing the UK’s orphan drug regulations?
It was a really great event and at Brain Tumour Research we came away full of plans on how we would work independently and collaboratively to drive the cause of brain tumour patients forward once, hopefully, the Bill receives Royal Assent in a few weeks’ time.
If you are new to our campaigning updates and would like to find out more about the Rare Cancers Bill, you’ll find this blog helpful:
Rare Cancers Bill: What you need to know
If you read in the update a fortnight ago about the Westminster Hall debate on tissue storage, you may also find this blog, recently published on our website, a valuable read:
Blog: What are cancer vaccines?
Jana Abdal Rahman, our Policy and Public Affairs Officer, and Dr Ben Newland
It is going to be a big year in the Devolved Nations and the campaigning team at Brain Tumour Research is putting finishing touches to our manifestos for Wales and Scotland and getting awareness-raising events in the diary. During Less Survivable Cancers Awareness Week, our campaigning team attended an event at the Senedd, organised by the Less Survivable Cancers Taskforce, to raise awareness of the poor outcomes for brain tumour patients and the lack of research funding for this type of cancer in Wales. Jana’s account of what happened can be read here:
Welsh Government urged to prioritise less survivable cancers
Next week, we will be at the launch of our Nottingham Research Centre, as well as part of a charity showcase with the AMRC at Westminster, while Katherine will be in Belfast and we’ll also join meetings of Cancer 52 and One Cancer Voice.
The Christmas holidays seem a long time ago and this is the calm before the storm. But after the storm of announcements must come the implementation.
That’s it for this week. We’ll be back next week.
Wishing you a peaceful time until then.
Karen, Hugh, Katherine and Jana.
