Rare Cancers Act 2026: What It Means for Brain Tumour Research
A Step Forward for Rare Cancer Research in the UK
Rare Cancers Bill has Become Law: What It Means for Brain Tumour Research
The Rare Cancers Act 2026 marks an important development for people affected by rare cancers, including many types of brain tumour.
Previously known as the Rare Cancers Bill, the legislation received Royal Assent on 5 March 2026 and is now an Act of Parliament. It introduces new measures intended to support rare cancer research, improve how potential clinical-trial participants can be identified and contacted, and review the rules surrounding medicines developed for rare cancers.
For people affected by brain tumours, the Act does not mean new treatments will become available immediately. However, it creates a stronger framework for research and clinical trials in an area where small patient populations can make studies and treatment development particularly challenging.
Rare Cancer Research
A Stronger Framework for the Future
Early diagnosis matters.
Understanding the New Legislation
What Is the Rare Cancers Act 2026?
The Rare Cancers Act 2026 is UK legislation designed to strengthen the way rare cancers are supported through research and treatment development.
One part of the Act requires the Secretary of State for Health and Social Care to review the law governing marketing authorisations for orphan medicinal products used to diagnose, prevent or treat cancer. The review must also consider approaches used in other countries and report its conclusions to Parliament within three years of the Act being passed.
The Act also introduces specific measures intended to make rare cancer research and clinical trials easier to organise and participate in.
Why This Matters for the Brain Tumour Community
Why the Rare Cancers Act Matters for Brain Tumour Research
Research into rare cancers can be difficult because relatively small numbers of patients may be eligible for individual studies. This can make it harder for researchers to identify participants, recruit enough people to clinical trials and generate the evidence needed to develop new treatments.
The Rare Cancers Act introduces measures intended to address some of these challenges.
Under the Act, arrangements must be made to help identify and contact potential participants for rare cancer clinical trials. It also requires a National Specialty Lead for rare cancers to be appointed to help support research design, planning and collaboration.
The legislation defines a rare cancer as one affecting no more than 1 in 2,000 people in the UK.
The Act includes measures to:
Support the identification of potential clinical-trial participants
Improve collaboration and leadership in rare cancer research
Create a National Specialty Lead for rare cancers
Review regulations affecting orphan cancer medicines
Support the use of health data to facilitate relevant clinical trials
These changes are intended to create better conditions for rare cancer research rather than provide an immediate new treatment or guarantee access to a particular clinical trial.
Making Clinical Trials Easier to Access
How the Rare Cancers Act Could Support Clinical Trials and New Treatments
A particularly important part of the Act concerns clinical trials.
The legislation requires arrangements that enable potential participants in rare cancer trials to be identified and contacted. The explanatory notes refer to the possibility of developing services such as the National Institute for Health and Care Research’s Be Part of Research service to provide more tailored support for people with rare cancers.
The Act also allows NHS England to disclose certain information for the purpose of facilitating relevant rare cancer clinical trials, while making clear that data protection legislation continues to apply.
In May 2026, the Department of Health and Social Care said implementation of the Act would help make it easier for clinical trials involving brain cancer to take place in England by making it easier for researchers to contact the relevant patient population.
For brain tumour research, improving the ability to identify suitable participants could help researchers recruit to studies involving smaller and more specific patient groups.
Support Is Needed Today Too
Support Families Affected by Brain Tumours
Changes to research and clinical trials are important for the future, but people living with brain tumours also need clear information, practical advice and support today.
Our Help & Advice section brings together guidance for people affected by a brain tumour diagnosis, while our Support Us page explains how you can help The Three Tumours continue supporting families and raising awareness.
Research, Charities and Patient Voices
Why Collaboration Matters in Brain Tumour Research
Progress in rare cancer research relies on collaboration between patients, researchers, healthcare professionals, charities, policymakers and organisations involved in clinical trials.
The Rare Cancers Act creates a formal role for a National Specialty Lead for rare cancers, whose responsibilities are expected to include supporting research design and planning and helping collaboration between those involved in rare cancer research.
For the brain tumour community, continuing to raise awareness of research challenges and the experiences of patients and families remains important as the measures within the Act are implemented.
Dr Scott Arthur, MP
From Legislation to Implementation
What Happens Next for Brain Tumour Research?
The Rare Cancers Act becoming law is not the end of the process. Attention now turns to how its measures are implemented.
The Government must carry out and publish its review of marketing authorisations for orphan cancer medicines within three years of the Act being passed. Arrangements are also required to support rare cancer research, identify potential clinical-trial participants and establish specialist leadership for rare cancers.
These measures will take time to develop, and the Act does not guarantee that an individual patient will gain access to a clinical trial or new treatment.
What it does provide is a legal framework intended to address some of the practical barriers faced by rare cancer research.
For people affected by brain tumours, the next important question will be how effectively those commitments translate into research opportunities and, over time, improvements in treatment.
Support Beyond Research
How Families Affected by Brain Tumours Can Find Support
Research progress matters, but living with a brain tumour diagnosis can bring immediate practical and emotional challenges.
At The Three Tumours, we provide information and support for people affected by brain tumours, including families and carers. Our Help & Advice hub covers topics including symptoms, after-effects, fatigue, support groups and everyday life following diagnosis.
You can also visit our Brain Tumour Support for Families page for guidance specifically aimed at partners, carers and loved ones.
Your questions, answered simply
The Three Tumours, Rare Cancers Act 2026 FAQ - FAQ
Start here: quick, helpful answers from our brain tumour charity.
If you still have questions, please do get in touch.
What is the Rare Cancers Act 2026?
The Rare Cancers Act 2026 is legislation intended to support research and investment into treatments for rare cancers. It received Royal Assent on 5 March 2026, meaning the former Rare Cancers Bill is now law.
Why does the Rare Cancers Act matter for brain tumour research?
Many brain tumours affect relatively small patient populations, which can make recruiting people to research and clinical trials more difficult. The Act introduces measures intended to improve rare cancer research, trial recruitment and collaboration.
Could the Rare Cancers Act improve access to clinical trials?
The Act requires arrangements to help identify and contact potential participants for rare cancer clinical trials. This could make recruitment easier, but it does not guarantee that an individual patient will be eligible for or offered a clinical trial.
Does the Rare Cancers Act introduce new brain tumour treatments?
No. The Act does not itself approve a new treatment. It creates measures intended to support research, clinical trials and the regulatory environment surrounding treatments for rare cancers.
What happens next under the Rare Cancers Act?
Implementation now includes putting research arrangements in place, supporting the identification of trial participants, appointing specialist leadership for rare cancer research and completing a review of the rules covering orphan cancer medicines. The regulatory review must be reported within three years of the Act being passed.
Where can I find official information about the Rare Cancers Act 2026?
The full Act and its explanatory notes are available through legislation.gov.uk, while the parliamentary history of the legislation is available from the UK Parliament website.
