I was pleased to be a member of the Rare Cancers Bill Committee as Shadow Health Minister. This Bill is a Private Members Bill by Dr Scott Arthur MP, which the Opposition is supporting and the Government has also agreed to support.
47% of cancers diagnosed in the UK fall within the “rare and less common” category, and they account for 55% of all cancer deaths. Rare cancers, and rare diseases in general, are often diagnosed late because people don't recognise the symptoms of a rare disease and their health professionals are not as familiar with them because they are rare. This can make treatment more difficult and lead to worse outcomes. That is compounded further because there has been less research on those topics, so it is not always clear what the best treatment for those conditions is.
It is important to ensure there is every incentive for research and development into drugs for rare conditions to improve the treatment options available to patients. Reviewing the Orphan Drug Regulations will help understand whether there is enough incentive for companies to invest in research into rare cancers. It is also vital to consider whether patients with rare cancers can currently be currently contacted easily about clinical trials and the merits of opt-in and opt-out systems for information on trials and other research at the point of diagnosis.
You can find out more about the Bill at 
https://bills.parliament.uk/bills/3779
