Rare cancer affects more than 70,000 people per year in the UK: more than 1 in 5 of the total. Sadly, about two thirds will die from their disease within 5 years- as compared with under half for more common cancers. We believe that this is unacceptable and have set up RareCan to work with people affected by rare cancer to help researchers find better treatments.
RareCan gives its members the opportunity to volunteer to take part in research which can truly make a difference.
Cancers with an incidence of less than 60 per million are defined as ‘rare’. They represent about a fifth of all cases of cancer presenting in the UK..
This group of rarer cancers includes over 180 different tumour types.
Overall these rarer cancers have a significantly worse 5-year survival rate compared to more common cancers (47% v 65%) and over half of all cancer deaths result from rarer forms of cancer.
For more information, see – Rare cancers are not so rare: The rare cancer burden in Europe: Gatta et al. EJC 47 (2011)
Finding people with rare cancer who are willing to take part in research and trials of new drugs is difficult. This reduces the attractiveness of researching rarer forms of cancer for academic researchers and for the pharmaceutical industry. Which in turn means there is less research completed and fewer treatments available.
RareCan represents a new approach to patient engagement in clinical research into rare cancers. Patient-driven at its core, RareCan promotes a ‘patient-first’ approach by empowering novel interaction between patients, clinical researchers and drug developers.
If you have a cancer diagnosis or you are the parent of a child with a cancer diagnosis, please start here.
If you’re a friend or family member of someone with cancer, a nurse, an oncologist, an activist, a fundraiser or you’d simply like to help, please start here.
If you are interested in setting up a research project or clinical trial aimed at improving the care people affected by rare cancer receive please start here.