GIST (Gastro Intestinal Stromal Tumour) is a very rare cancer.
We are a charity and focus group consisting of parents of children & young people with GIST, specialist GIST doctors and GIST Support UK
At present, there is no cure for this type of cancer, and no research currently being undertaken in the UK. Furthermore, due to its rarity in children, there is no specialist group with expertise in the child form of this cancer in the UK.
We aim to change this situation and are currently working with GIST Support UK to form a medical focus group of GIST experts in the UK who will specialise in Paediatric and Wild type GIST.
By pulling together the combined knowledge of these experts we hope to pool & share knowledge, define the most effective treatments, improve life expectancy/quality of life and ultimately find a cure for Paediatric/Wildtype GIST.
All Paediatric and Wild-type GIST patients have questions and fears that are not easily answered and we believe our focus group of doctors in combination with others in America & Europe will find answers and evolve treatments that will benefit young patients and other Paediatric & Wild-type GIST cases in the future. It is also our intention to find an appropriate way to include Paediatric GIST patients in clinical trials of drugs that could provide the cure or at least the best treatments.
We are raising funds for research and to develop the best possible care and treatment for these young people so that they stand the greatest chance of survival. We also hope to raise public awareness of this rare cancer and provide support and information to patients, their families and friends.
PAWS-GIST aims to:
- We aim to lobby for the inclusion of Paediatric GIST patients in clinical trials of drugs that could provide the cure, or at least the best treatments, for this cancer.
- We hope to encourage doctors to pool and share knowledge, define the most effective treatments, improve life expectancy and quality of life and ultimately find a cure for Paediatric/Wildtype GIST
- We wish to raise awareness and create dialogue of this extremely rare cancer through the use of our website and other media..
- We aim to provide support and information to young PAWS GIST patients and their families and friends so they are better equipped to deal with the challenge of living with PAWS GIST
- We aim to encourage the establishment of clinics in the UK for PAWS-GIST patients, which will in turn act as a focus for oncologists and researchers from all over the UK.
Established: November 2010
Registered Charity Number: 1129219
Board members: 8
Phone number: 07958568525
Address: Bowd Farm Woodmead Lane Doynton Bristol BS30 5SXView charity accounts on the Charity Commission website
Establishment of PAWS GIST cancer clinic in the UKTo realise a sustainable PAWS GIST clinic with research capability in the UK so that we ca... More