GIST Support UK
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 [email protected] 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 [email protected]
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 [email protected] 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
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
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.