Draft rare cancers law offers hope to those with incurable brain tumours

[bobbler]

Draft rare cancers law offers hope to those with incurable brain tumours

Abi Feltham was diagnosed with a brain tumour in May 2024 and was told she has 15 years to live.

www.the-independent.com

This news item came up on social media

And it's interesting and struck me that it is a useful one to flag on some thread that is talking about severe, very severe and maybe research as I find it interesting the approach it is taking regarding database to link up patients with trials, but also putting someone at the head of co-ordinating research. Even if for ME/CFS that was a similar format but for just looking into protocols for what works for those more severe etc.

 

[bobbler]

Rare cancers are complex, often deadly, tumours which affect less than six in 100,000 people.

There is a lack of incentive for pharmaceutical companies to develop specialised treatments currently, because of the relatively small market for specific drugs.

The Bill would require the Health Secretary to review the law relating to so-called “orphan” drugs.

A national lead on rare cancers would also be established under the Bill’s proposals, with the responsibility of promoting and facilitating research.

The Rare Cancers Bill proposes to set up a database of rare cancer patients so they can be easily linked to relevant clinical trials.