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

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.

Parliamentary Candidate Letter Template - Please write to all of your local Parliamentary Candidates standing for election using our template, arrange to meet them and gain their support to retain regorafenib on the CDF for GIST patients... Here's a copy of the Press release to accompany your letter

GSUK's #100000voices campaign beats target! Our work to re-instate regorafenib for GIST continues... Please continue to ask your MP's for their support...


Manchester Patient Meeting 24th April 2015
Invitations to this meeting have now been sent out.  If you have not received an invitation and feel you should have done, please contact us on .

MP Letter Template - Please write to your MP and ask for their support in re-instating Regorafenib to the Cancer Drugs fund for GIST patients. The deadline is fast appraoching. This drug works for GIST patients, our patients lives depend upon it. 

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

We have recently been experiencing some problems with our special 0300 4000000 helpline.  We are happy to say these have now been fixed.  If you haven't been able to get through, please try again!

PRESS RELEASE: CALL FOR REINSTATEMENT OF RGORAFENIB TO CDF FOR GIST PATIENTS. Please click the link for our full statement. Please reinstate REGORAFENIB to the Cancer Drugs Fund our patients' future depends upon it.

Next PAWS-GIST Clinic: will be held on 17th April 2015. Registrations for this clinic are now open via www.pawsgistclinic.org.uk  

NEXT PATIENT MEETING. Our next Patient/Carer meeting will be on Friday April 24th 2015 in Manchester City Centre. If we already have your details we will be emailing or posting invitations to you in the New Year. If we don't have your details them please email admin@gistsupportuk.com or phone us on 0300 400 0000

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

The Videos from our Bristol Meeting April 2013 are now available on our meeting reports page.

Update on Compassionate use & Clinical trials. Regorafinib is no longer available on compassionate access but applications to the Cancer Drug Fund can be made. It is still possible to get compassionate access to Masitinib, and a first line trial of Mastinib is still open till the end of this year. Click here for more info.

New Appointments      See our new trustees & special adviser appointments on our About GistSupportUK page

The second edition of "GIST for Beginners", our booklet about GIST and its treatment is now available.  The text of the first edition can still be downloaded from our Publications page.  (The new edition is not yet availabe for downloading.)

GIST Tumour Bank to be set up
Ethics Committee approval has been received for setting up a GIST tumour bank, which will also include rare PAWS-GIST material. See our News page for further details.

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.

Ninth International Pediatric and Wild-Type Clinic
See our Meeting Reports page for a report on this recent conference.

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.