Gastrointestinal stromal tumours (GIST)

Partnership with GIST Cancer UK and PAWS GIST

Having a large number of PAWS-GIST and GIST Cancer patients in one place, who wish to be made aware of research that could help them, puts patients in a stronger position to find treatments. Saying: “I am here and ready to participate” will speed up the time it takes for researchers and drug companies to get enough patients recruited for their trials.

Gastrointestinal stromal tumours (GIST)

For a much more detailed guide, please read our GIST information pack.

Also known as:

GIST
Gastrointestinal stromal sarcoma

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.

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.

Looking for a different cancer type?

Please visit our ‘rare cancer list’ to search for your cancer type

Useful links

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

GIST Cancer UK

gistcancer.org.uk

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.

PAWS GIST Clinic

www.pawsgistclinic.org.uk

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.

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

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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!