Why is RareCan interested in GIST?

RareCan is working to accelerate research into Gastrointestinal Stromal Tumours (GIST) by making it easier for researchers to connect with people with GIST. You can help us do this by becoming a RareCan member and sharing information with us about your diagnosis. We will then get in touch with you about any research opportunities that might be suitable for you.



What is GIST?

A GIST (Gastrointestinal Stromal Tumour) is a rare type of sarcoma found in the wall of the digestive system, most often in the stomach, but it can also grow in other parts. A soft tissue sarcoma is a type of cancer.

How rare is GIST?

GIST is classed as a rare cancer with less than 1,000 people a year being diagnosed with a GIST Cancer.

Who does GIST affect?

A GIST cancer usually affects people in their mid 50s to 60s, but it can also affect younger people.  When it affects children and young adults it is classed as very rare.

RareCan & the GIST Community

RareCan have a wonderful partnership with the GIST Cancer community. Most recently RareCan has been able to offer its members with a GIST Cancer diagnosis the opportunity to participate in research called ‘exome sequencing’.

This process uses some tumour tissue to find changes associated with GIST that will enable the researchers to learn more about the DNA damage which occur in rare cancers. 

Useful Links:

If you are looking for further support with GIST Cancer we recommend the following websites:

GIST Cancer UK has been set up to support people with a GIST cancer diagnosis.  Giving them  access to information, patient meetings and support groups, as well as creating awareness and raising valuable funds for research.


The PAWS GIST Clinic has been set up to specifically to help those with a Paediatric Adolescent Wild-type & Syndromic GIST diagnosis. Like GIST Cancer UK, they give patients access to information, patient meetings and support groups, as well as creating awareness and raising valuable funds for research.

Looking for a different cancer type?

Please visit our ‘Rare Cancer List’ to search for your cancer type 



The RareCan BioResource

Donating your samples for medical research

RareCan has its own BioResource which has been agreed with the Research Ethics Committee.  As a member of RareCan, you have the opportunity to join this BioResource.  If you choose to join it,  RareCan will hold a sample of your tissue to be used in future research projects.

As a GIST patient, you may have already agreed to have your tissue stored at the National GIST Tissue Bank at the Royal Marsden Hospital.  Please note that the RareCan BioResources is not part of this and as such, you would need to sign up separately to each of them.

If you have any questions a member of the RareCan team will be happy to help you.


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