Who are you?
I have a cancer diagnosis
If you have a cancer diagnosis or you are the parent of a child with a cancer diagnosis, please start here.
I'm a supporter
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.
I'm a researcher
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.
We believe that people with rare cancer have the right to live better, longer lives. We make this happen by bringing people together to create opportunities to accelerate research.
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.
Frequently Asked Questions
People often talk about cancer as if it is a single disease but in fact there are many types. It can occur at any age, even before birth, and affect just about any part of the body. Looking under the microscope doctors can distinguish more than 200 different forms of cancer but some of these are much more common than others. “Common” and “rare” are obviously relative terms but most specialists define a rare cancer as one which occurs in less than 60 people per 100,000 each year ie about 4,000 people each year in the UK alone.
Because they affect most people, most cancer research is done on the four most common types of cancer: breast, prostate, colon and lung. Although much needs to be done to improve the way that these cancers are diagnosed and treated, far less is known about the rare forms of cancer which means that it is often difficult for doctors to give the best advice and prescribe the best forms of treatment to people affected by them.
Cancer Research UK also has an excellent website which has an alphabetical list of cancer types linked to further information about their frequency https://www.cancerresearchuk.org/about-cancer/type
For research to be reliable it needs to be undertaken on enough people to be sure that observations aren’t occurring purely by chance. Finding enough people willing to take part in research with a certain type of cancer is relatively easy for the common cancers but for rare cancer it can be very difficult as they may live anywhere in the United Kingdom
Is my Cancer Rare?
This is one of the most common questions we get asked by potential RareCan members.
The RareCan BioResource
Donating your samples for medical research
Joining RareCan gives you the ability to donate your tissue samples to the BioResource for medical research. Please note that signing up to RareCan does not commit you to donating tissue and you can cancel your membership at any time. Click the button below to find out more about our BioResource.
Conversations about Rare Cancer
We want to ignite conversations around the issues that face the rare cancer community and connect with others who want to innovate in this space. We will be talking to patients, parents, researchers and other stakeholders about how we can drive forward initiatives, like RareCan, which are set to drive sustainable progress at speed and at scale.