About GIST Cancer UK

GIST Cancer UK aims to support GIST cancer patients and fund research into GIST to improve treatments and find a cure for this rare cancer.
GIST Cancer UK is a charitable trust which acquired its charitable status in April 2009. Before that time it was a subgroup of Sarcoma UK, and the two organisations continue to maintain a close relationship.
We have been working hard to establish an infrastructure here in the UK that will help to stimulate research into GIST. In recent years we have helped to re-write and update the National GIST Guidelines and establish the National GIST Tissue Bank and also the PAWS-GIST clinic at Addenbrookes hospital in Cambridge. All of these things help to stimulate research and our work continues...


GIST Cancer UK is here to offer support as you come to terms with living with GIST cancer

We are a network of patients and their carers, all of whom are affected by GIST. We share experience and offer each other mutual support by telephone and by email. Currently we also hold two meetings a year, where members have the opportunity to meet together, and also to meet professionals working in the field. You will find reports of meetings in the Patients Meetings section on this website (see drop-down headings).


GIST Cancer UK provides information for patients, carers and medical professionals

We have information about GIST and treatment options, chances and risks, and new clinical trials and we offer you the opportunity to share experience with other patients. All this can help you to find your bearings and to make more informed choices about your treatment. Being an informed patient will lessen the feeling of being at the mercy of this illness and will help you to be more in control of your life again.

GIST is a rare cancer and many doctors and nurses have never heard of it, or know very little. This can delay accurate diagnosis and appropriate treatment, so we also aim to educate the professionals and raise awareness of GIST amongst the general public.


GIST Cancer UK funds and stimulates research into GIST

Medical understanding of GIST has advanced rapidly in recent years but there remains much that is not understood. We raise funds so that we can provide financial assistance to selected researchers seeking to improve treatments and find a cure for GIST. We work with the Royal Marsden in maintaining the National GIST Tissue Bank and with Public Health England to develop the National GIST Registry so that researchers in need of GIST tissue samples and statistics can have access to these valuable samples and information.



GIST cancer is not a single condition but a range of closely related diseases. Some of the rarest forms are collectively known as Wild-type GIST which particularly (but not exclusively) affect children and young people.

PAWS-GIST (Paediatric, Adolescent, Wild-type & Syndromic GIST) is a specialist clinic which focuses on children, young people and all with wild-type GIST.

The PAWS-GIST Clinical Focus Group aim is to find a cure for paediatric, adolescent, wild-type and syndromic GIST cancer in the UK. Specialist clinics convene three times each year.

If you have GIST, and if you can accept and come to terms with the illness, you can continue to lead a "normal" life.
Every day, research into GIST is giving us new knowledge, and new treatment options are being explored and trialled.

For more information please:

Support that we offer

Telephone helpline: 0300 400 0000

Patient/Carer meetings: Click here

Listserv: To join our private online patient/carer form please email admin@gistcancer.org.uk

Patient  information: Click here

PAWS-GIST Clinic: Click here


Research that we fund

We fund research projects into GIST cancer to improve understanding and uncover answers to improve treatment and find a cure.

All research projects funded by GIST Cancer UK are funded entirely using the charitable donations and funds raised by our supporters.

Read more ...


The stated objectives of GCUK are

Objective 1

To promote and protect the physical and mental health of patients with Gastro-Intestinal Stromal Tumours (GIST) in the United Kingdom through the provision of information, support, education and practical advice to them and their carers.

Objective 2

The relief of sickness and the preservation of health in particular by promoting and supporting research with the publication of the useful results thereof and the development of more effective treatment and care for patients with GIST.

Objective 3

To advance the education of the general public and health professionals in all areas relating to GIST.



Because GCUK is a charitable trust and not a membership organisation, it does not have a "membership" in the legal sense. However, we do maintain a database of patients and carers who have contacted us for help and support, and it is to names on this database that news and information on meetings is circulated.


GCUK is supported in its work by grants from Blueprint and Deciphera, together with charitable donations from patients, carers, and other sources. (See also our Fundraising page)

Donations and help with fundraising are also gratefully received. 

Please Donate On Line via JustGiving:

You can make a one-off donation or set up a monthly donation conveniently and securely with your credit or debit card via our GIST Cancer UK and PAWS-GIST JustGiving accounts. If you are setting up a fundraising page for our PAWS-GIST fund please specify this in the text on your page.