The Rare Cancers Bill is becoming law

28 February 2026 | Campaigning and research, News

This month marks a major milestone in the fight against rare cancers (those affecting fewer than 1 in 2000 people), including brain tumours, as the Rare Cancers Bill has successfully passed its Third Reading in the House of Lords and will now proceed to Royal Assent to become law.

For many years, people living with brain tumours have faced inequalities in research and treatment. Compared with more common cancers, research investment is limited, clinical trials are harder to access and new treatments can take longer to reach patients. This law represents a significant step towards closing that gap.

What the Rare Cancers Bill means

The Rare Cancers Bill is designed to transform how rare cancers are supported in the UK including:

Improved access to clinical trials

One of the biggest challenges for rare cancer patients has been finding and joining relevant research studies. This legislation will help make patient data more accessible for research purposes and improve the way eligible patients are identified and contacted about trials.

A commitment to strengthen research

The new law will make it the Government’s duty to promote and facilitate research into rare cancers, including many types of brain tumours.

 A national focus on rare cancers

Appointment of a National Specialty Lead for Rare Cancers, a dedicated role within the National Institute for Health and Care Research (NIHR), responsible for accelerating research and improving access into clinical trails.

Review of orphan drug regulations

“Orphan drugs” are drugs designed to treat rare conditions, but historically they were perceived as non-commercially viable. The new law will set out a formal review of the UK’s regulatory framework for orphan drugs, to enable innovative treatments to be developed and approved for use.

The Bill’s passage is a testament to years of campaigning by charities, patients, clinicians, and advocates who have worked to raise awareness of the unique challenges faced by individuals impacted by a brain tumour. While this is a huge step forward, legislation is only the start. Progress will depend on how this law is put into action, how research funding and implementation follow through and how quickly patients can see improvements in trial access and treatment options.