News and events

05/03/26

Rare Cancers Bill Becomes Law

On 5 March 2026 the landmark Rare Cancers Bill officially became law as the Rare Cancers Act 2026. The Bill, led by Scott Arthur MP, triggers a U.K. wide review of how new treatments for rare cancers are assessed and funded. There is currently a lack of incentive for pharmaceutical companies to develop specialised treatments because of the relatively small market for specific drugs. The new law will require the Health Secretary to review the law relating to so-called “orphan” drugs.


The Rare Cancers Act 2026 will also improve the way eligible patients are identified and offered relevant clinical trials through a robust database. 


In England and Wales, a new National Speciality Lead for Rare Cancers will be responsible for promoting and facilitating research and delivering on the new strategy.


It’s an exciting step to to ensure that chordomas, and other rare cancers, are treated with the urgency they deserve.


"Today is a landmark moment for everyone affected by sarcoma and all rare cancers," said Sarcoma UK CEO Richard Davidson. Sarcoma accounts for about one per cent of all cancer diagnoses, yet carries a disproportionate burden of mortality. The passing of the Rare Cancers Bill sends a clear signal that patients with rare cancers matter and that the system must work harder for them.

For too long, patients with sarcoma and other rare cancers have been left behind, receiving fewer treatment options, less research investment and little hope of accessing a clinical trial. The Rare Cancers Bill changes that. The fact that 82 per cent of rare cancer patients have never been offered a clinical trial place is a scandal that this legislation will begin to address."

Read more on Sarcoma UK


Read the full legislation here


Photo credit: Sarcoma UK. Scott Arthur MP, who introduced the Private Members’ Bill, at a British Sarcoma Group conference (BSG) that was held in Oxford. He spoke about the Bill during the event. He is pictured with Richard Davidson, CEO of Sarcoma UK, and Prof Anant Desai, who is BSG President.




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