A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!


Welcome to GIST Support UK

(The club no-one wanted to Join!)

Who we are

This site is primarily for GIST patients and their carers. Most of the content is provided by patients, not by doctors or nurses. We value your feedback so please feel free to email us at  with your comments, corrections and additions.

GIST Support UK is here to be with you as you come to terms with living with GIST. 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 the most recent meetings on our Meeting Reports page meetingreports.htm.

We have information about GIST and treatment options, chances and risks, and new clinical trials and we offer you the opportunity to share 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.

PAWS-GIST is a specialist branch of GIST Support UK which focuses on children, young people and all with wild-type GIST. We are a Clinical Focus Group whose aim is to find a cure for paediatric, adolescent, wild-type and syndromic GIST cancer in the UK. Our specialist clinics convene three times each year. For more information please go to www.pawsgistclinic.org or contact Jayne Bressington at admin@gistsupportuk.com 

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 trialed.

What we do

  • We operate a phone help line 0300 4000000 for GIST patients and their carers
  • We run meetings where GIST patients and their carers can support each other, share experiences, and hear about the latest developments in the treatment of GIST from leading professionals.
  • We try to keep abreast of developments in the treatment of GIST by maintaining contact with:

        - pharmaceutical companies

        - specialist doctors and research groups

        - patient support groups all over the World.

  • We operate a private online patient & carer discussion/question and answer group (LISTSERV) where members can email the group to ask questions, exchange information and generally discuss their problems. This is a private and confidential mailing list system which is only available to GIST patients and their carers. For further information on how to join, please either telephone us on 0300 400 0000 or email us at giving us some details about yourself.
  • Facebook & Twitter communities
  • Produce booklets and information for patients/carers covering a range of useful GIST topics 
  • Raise awareness about GIST
  • Represent GIST patient interests

        - at NICE appraisals of new treatments

        - at National and International meetings

  • Work to support an infrastructure that supports research and improves patient care
  • Lobby for the rights of rare GIST cancer patients
  • Work with the pharmaceutical industry to support research and good patient information about their drugs


The LISTSERV system is hosted for us by LSOFT at

Protecting your data

In order to support our work we maintain a database of patients who have called (or whose carers have called) with details of their disease and subsequent treatment, together with their contact details. We use this database partly to build up our own experience, but mostly so that we can invite patients and their carers to the information meetings which we hold around the country. The data we keep is not a substitute for the detailed clinical records kept by the medical professionals, but it serves as an aide-memoire to GSUK when in contact with a patient. Our data is password protected and can only be accessed by officers of GSUK. It will not be shared with any other organisation. There is no obligation for a caller to provide any information, but in this case the assistance GSUK can give will be very limited. In accordance with the provision of the Data Protection Act, and on request, GSUK can provide a caller with a hard-copy version of all the data held on the database relating to that caller.

How to meet other GIST patients

Patient/Carer Meetings
Attend one of our meetings, currently held twice a year, in April and October. To receive further details or to find out about our forthcoming meetings please see our News page.

ListServ Email Forum
Join our safe, secure ListServ system (see above) to exchange information and meet others in similar situations to you.

Why not wear one of these little ribbons when you visit Out-patients, to show that you are a GIST patient? Maybe you will find another GIST patient to talk to. Just email us and we will send you a ribbon. A £1 donation will cover the cost and also help GIST Support UK.

How you can help us

Raising Awareness
We want as many GIST patients as possible to know about us. If you are being treated in a local district hospital, why not ask them to put up a poster? Click here to download an A4-size poster that you can print out.

Alternatively why not ask your hospital to display some of our publicity leaflets? Just let us know which hospital, and who the appropriate contact person is. We can then add them to our distribution list and keep them supplied. Click here to see a PDF of our publicity leaflet.

"Like" us on Facebook or "Follow" us on Twitter Keep up to date with latest news and fundraising campaigns by visiting our Facebook page or following us on Twitter. Invite your friends and family to do so as well and help us to raise awareness of GIST Support UK.

Help us raise funds

Have a look at our Fund Raising page for ways to support us financially. 

Donate Online to GSUK Thank you for your support!


Donate Online to PAWS-GISTHelp us to Find the Cure!


Help us raise funds
Have a look at our Fund Raising page for ways to support us financially.

Clinical Trial - 3 v 5 years adjuvant imatinib recruitment extended until 31st March 2020- trial centre list update here

The next PAWS-GIST clinic is happening on Friday 12th April 2019. Registration is via PAWSGISTCLINIC.ORG.UK 

Our next Patient Meetings are in Leeds on Friday 4th October 2019 and London - 6th March 2020. If you would like to join us please email  to register. We look forward to seeing you...

Rare Cancer Patient Survey - collecting feedback on rare cancer patient experience with clinical trials...

On the 10th October the Scottish Sarcoma network are holding a day called RISE at the Western Park Hotel in Falkirk. The day is dedicated to people with a sarcoma diagnosis and their families to focus on "what matters to me". This poster contains the registration details if you would like to attend. GIST Support UK will be represented at this meeting and we look forward to seeing you. 

A big thank you to Scotmid Co-operative for choosing to support GIST Support UK and the development of our national tissue bank. Read more here


If you missed any of our previous meetings, you can view the speakers' presentations here

Clinical Trial - 3 v 5 years adjuvant imatinib - trial centre list update here

19th August 2017 - Page 19 of the Times GIST report - READ HERE

New UK clinical practice guidelines for the management of gastrointestinal stromal tumours (GIST) published by British Sarcoma Group - NEWS >>>

GSUK's Chair Nic Puntis discusses the BBC's report on the Cancer Drugs Fund on BBC Wiltshire Radio - NEWS>>>.  

Update on GIST clinical trials that are recruiting and in the pipeline....

We have launched our first GIST patient survey and hope to gather a better understanding of the landscape for GIST patient treatment in the UK. The survey closes on 10th September 2016 so if you would like to participate please complete the survey by clicking this link

'ALT' GIST Trial to open in the UK soon! We have been alerted to a new trial that will be opening in the UK in the near future for metastatic GIST patients. Read more on our Trials & Research page 

PAWS-GIST Clinic 7 - Newsletter June 2016

GSUK attends Cancer52 parliamentary reception to raise awareness of rare and less common cancers.

GSUK Research Update 2016 - Read all about it here

NHS England's Sarcoma Service Specification consultation is open until Weds 20th April 2016.       Please register your views by responding directly via this link.                             GSUK's response can be viewed here

Cycle for GSUK! We have four allocated charity places on the RideLondon event for this year and also for 2017 and 2018. Go to our News page to find out more!

The Masitinib Trial is now open.  For further details of this trial, and to find out which centres and clinicians are involved, please go to our Research & Trials page. 

Regorafenib has remained on the NHS England Cancer Drug Fund List for GIST patients! Read more!

Can you help Professor Eamonn Maher with his research Study? If you have had, or have, two or more primary GISTs, or a GIST and another tumour, find out more at the bottom of our research page

PRESS RELEASE - UKTV announces GIST Support UK as its Charity of the Year 2015

TUMOUR BANK UPDATE: "We have been granted approval from the NHS ethics committee for our National GIST Tissue Bank which will store these valuable GIST tumour samples for research. If you are about to have an operation and would like to donate your tissue for research please email  with your contact details. Visit our Retention of tissue page for regular updates.

Scottish Sarcoma Network: Interested in attending their Sarcoma education days or finding out about the services on offer ? Read our News page

Use of human tissue
Do go to our new "Retention of Tissue" page and please sign a consent form!

GSUK funds research!
GSUK provides £20,000 from donated funds to help start a research project at the Royal Marsden. Visit our News page for further information and picture.

Funds being raised for UK PAWS GIST clinic
See our News Page for more information.

NICE approves improved treatment for ascites
The PleurX system allows the patient to drain fluid from the abdominal cavity without having to pay repeated visits to hospital. More information on our News Page.

European Commission approves three years' adjuvant use of Glivec
Visit our News page for more details.

A press release in February claiming the effectiveness of this drug as a replacement for Sunitinib appeared to be premature at the time. However subsequent news may be more encouraging! See our News page for more details.