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.

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 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
  • and patient support groups all over the World.

 

We operate a LISTSERV system ("Mailtalk") 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.

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.

"Mailtalk" Email Forum
Join our safe, secure "Mailtalk" 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.

Next Patient Meeting. Please note change of date: Our next Patient/Carer meeting is Friday October 24th 2014 in Birmingham.  Full details and joining instructions will be sent out shortly.  Watch this space! 
 

TUMOUR BANK UPDATE: "We are applying for a new approval from the NHS ethics committee to cover all the experiments we would like to do on these valuable GIST tumour samples. Details will be posted soon. In the intervening period, please email  with your contact details and Jayne will keep you updated." 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 Mastinib, 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

Our new booklet about GIST and its treatment is now available.  The text can also be downloaded from our Publications page
 

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.

Masitinib
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.