RareCan specialises in supporting people with rare cancers.
RareCan connects you to information and tools to help you understand and manage your life with cancer, and to researchers looking to improve diagnosis and treatment of rare cancers.
We believe people with rare cancers have the right to live better, longer lives.
How we work:
1. Join our community
Join the RareCan Community by creating a secure RareCan account.
2. Provide information about your cancer
By uploading clinic letters and histology reports, entering information through your account or speaking to one of the team.
3. Tools and support
We use the information give us to provide increasingly personalised tools and support that is relevant to your diagnosis.
4. Research and Trials
We use the information you give us to identify potentially suitable research opportunities for you.
Bringing together rare cancer patients and researchers to accelerate discovery, translation and clinical trials of rare cancer treatment and diagnostics.
Clinical trial finder
Helping you to find open clinical trials and helping you to assess whether they are potentially applicable to you.
Established in conjunction with the NHS Research Ethics Committee and the RVI Newcastle, this allows you to consent to samples being used for research.
A place to securely store copies of all documents and correspondence related to your cancer.
A growing resource of information specific to your cancer and research that is happening in that area.
Being part of the RareCan community helps to build sufficient numbers of people with the same rare cancer diagnosis to help drive research forwards.
We collaborate with partners across the healthcare system to support patients with rare cancers.
Is my cancer rare?
If your cancer falls outside of the ‘big four’ (lung, bowel, breast and prostate cancers), then it is likely to be rare. Even if you do have one of these big four cancer types, there are sub-types that are considered rare. If you’re unsure, please sign up and we can guide you. If you’d like to see our A to Z of rare cancers, please click the button below.
Rare cancer treatments
Detailed articles explaining the different types of treatments that exist for rare cancers and for cancer in general. More to be added in future.
You may find the answer to any questions you have in the list below. If you can’t find the answer you are looking for, please contact us at firstname.lastname@example.org
We focus on cancers that fall outside of the ‘big four’, so if you have any type of cancer other than lung, breast, bowel, or prostate cancer, then becoming a RareCan member might be right for you.
Even if you do have one of the ‘big four’ common cancers, there are rare sub-types of these that are considered to be rare. If you’re unsure, then please do still join us – signing up only takes a couple of minutes and you can leave at any time.
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
Our latest rare cancer information packs
Detailed information about individual rare cancers. More to be added in future.