GIST Cancer UK is a charitable trust which acquired its charitable status in April 2009. 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. 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. 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. PAWS-GIST (Paediatric, Adolescent, Wild-type & Syndromic GIST) is a specialist branch of GIST Cancer 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.
