Rare cancer affects more than 70,000 people per year in the UK: more than 1 in 5 of the total.

Focussed on the needs of people with rare cancer

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.

At the moment our focus is on adults with rare cancer. If you are currently under 18 or a parent of a child with a rare cancer, we suggest you join as a supporter so that you can keep up to date on what RareCan is focussing on and be the first to know if we have any trials for children in the future.

People affected by rare cancers are at the heart of all that we do

RareCan gives its members the opportunity to volunteer to take part in research which can truly make a difference.

Rare Cancers and their Outcomes

Rare cancers are actually quite common - and yet have worse outcomes than more common cancers.

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)

Malignant Melanoma Story

Problems with research

More research needs to be done to improve the outcome of people with rare cancer. 

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.

Opportunities to do things differently

By bringing people with rarer cancers together , we can speed up research – and ultimately improve outcomes.

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.