Accelerating Rare Cancer Research

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.

We founded RareCan because together we can increase treatment options for rare cancer patients.

We founded RareCan because together we can improve outcomes for people with rare cancers

We founded RareCan because together we can empower people with rare cancer

We founded RareCan because together we can increase the number of options and opportunities for people with rare cancers

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.

Our Tools:

Research platform

Bringing together rare cancer patients and researchers to accelerate discovery, translation and clinical trials of rare cancer treatment and diagnostics.

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Clinical trial finder

Helping you to find open clinical trials and helping you to assess whether they are potentially applicable to you.

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BioResource

Established in conjunction with the NHS Research Ethics Committee and the RVI Newcastle, this allows you to consent to samples being used for research.

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Digital wallet

A place to securely store copies of all documents and correspondence related to your cancer.

Knowledge library

A growing resource of information specific to your cancer and research that is happening in that area.

Community

Being part of the RareCan community helps to build sufficient numbers of people with the same rare cancer diagnosis to help drive research forwards.

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Our partners

We collaborate with partners across the healthcare system to support patients with rare cancers.

I joined RareCan to support research into my extremely rare and highly aggressive subtype of uterine cancer

I joined RareCan as it may help other people in the future

I joined RareCan because they have the solution to the challenges faced within rare cancer research

I joined RareCan to get action and support and research on rare cancers

If my husband was alive today, he would encourage people to take part in research as you never know if you will ever need it in the future

While there is no guarantee that we will immediately get access to a trial or new drug, by being members of RareCan, it could very well help our cause to progress this area of research. You need to be in it to win it!

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.

FAQ

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 info@rarecan.com

Should I join RareCan?

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.

What is rare cancer?

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.

Why are rare cancers different from 'the big four' cancers?

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.

How do I know if my cancer is classed as rare?

We have a recent blog post, ‘Is my Cancer Rare?‘, that tries to answer this question, and we have also started a list of rare cancers.

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

Why is it so difficult to do research on rare cancer?

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