Project information

Establishment of PAWS GIST cancer clinic in the UK

To realise a sustainable PAWS GIST clinic with research capability in the UK so that we can find a cure for our children, improve current treatments and provide support and information to GIST patients and their families.We are raising funds to develop the best care and treatment for our children

We would like to run the clinic for a trial 12 month basis with a view to extending it for an additonal 2 years providing we can access funding to enble us to do this.

Charity information


  • Need


    GISTs (Gastro Intestinal Stromal Tumours) are very rare malignant tumours of soft tissues in the gastro-intestinal tract (the stomach and intestines) and are a form of sarcoma.
    Most UK doctors have not heard of GIST so it is often misdiagnosed, resulting in unsatisfactory patient management & variable treatment. There is insufficient knowledge in the UK of this rare and complex disease and it requires highly specialist treatment.


    By establishing a clinic in the UK we can...
    • Lobby for the inclusion of Paediatric GIST patients in clinical trials of drugs
    • Encourage doctors to pool and share knowledge, define the most effective treatments, improve life expectancy and quality of life and find a cure.
    • Provide support and information to young PAWS GIST patients and their families
    * Raise awareness and create a situation where PAWS-GIST patients are automatically referred to a specialist centre

  • Aims

    Aim 1

    * To establish a PAWS GIST clinic which will become a focus for oncologists and researchers.


    » We have identified GIST specialists willing to work with our group and now need to establish a clinic where patients and specialists can come together

    Success will be a sustainable PAWS GIST clinic with research capability for PAWS GIST cell line development and the identification of biomarkers used to develop targeted drugs

  • Impact


    The development of better treatments and provision of a centre of excellence for patients, researchers and doctors who will share information, learning and work collaboratively. We aim to give all PAWS GIST patients in the UK the opportunity of attending the clinic within the first 12 months of it's establishment so they can share experiences and information and participate fully in the development and evolution of the clinic. We aim for a 90% attendance by PAWS GIST patients in the UK


    1. Not having the appropriate specialists in place - We have dealt with this risk by already identifying specialists willing to work with our group.
    2. Not having a high enough profile - we have dealt with this risk by engaging with other cancer interest groups such as Rare Cancers Europe, and are working towards the construction of a national GIST register of UK patients . We have met provisionally with Professor Michael Richards to progress the possibility of Specialist Commissioning Status


    We will publish progress of our project on our website, via Facebook and Twitter and also email or post supporters a bi-annual newsletter giving an update on this project, any necessary changes that have been made to our plans and others we are undertaking

  • Budget

    Budget - Project Cost: £110,000

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      Amount Heading Description
      £40,000 Premises and running costs Two 3 day clinics year 1
      £40,000 Accomodation and travel Cost of patient/guardian/specialist accomodation and travel cost access to clinics
      £30,000 Research Costs associated with first year PHD student research
  • Background


    Currently undetermined although we have had discussions with our Lead Clinician with regard to locating the clinic at Addenbrookes Hospital in Cambridge. Cost will to a certain extent determine the location of the clinic. We have so far raised approximately £40000 towards the establishment of the clinic through a series of fundraising initiatives that patients, family, and friends have supported.


    All PAWS GIST patients in the UK and worldwide can benefit from the establishment of a clinic. There is a train of thought that if a cure is found for PAWS GIST it will open avenues to find solutions with regard to other currently incurable cancers including other forms of GIST. There is at the moment only one other clinic in the world which is in Washington DC, USA

  • Why Us?

    Why Us?

    We are the only charity that have pulled together all the UK GIST specialists to focus on PAWS GIST patients. We are unique in Europe in that we are the only charity that is focusing on this group of patients and we have already made significant impact by raising the profile of PAWS GIST and advocating for an otherwise isolated patient group. We have successfully engaged with other organisations in the UK, Europe and America in order to raise the profile of UK PAWS GIST patients

    Read more about the Charity running this project.


    Dr Ramesh Bulusu Our Lead Doctor

    He recently attended the only clinic in the world where research is being undertaken into PAWS GIST and will support the establishment of a UK clinic.

    GIST Support, Sarcoma UK, SPAEN, SIOPE, ECPC And Rare Cancers Europe

    All of the above organisations support us by providing guidance, access to other experts and to achieve support to establish our UK clinic

    Jayne Bressington, Trustee PAWS GIST

    Jayne is instrumental in bringing all these groups together in order that we can access the expertise and knowledge needed to establish a clinic

    Dr Lee Henman PAWS GIST Clinic, Washington DC

    Lee's experience in the setting up and maintenance of the only current PAWS GIST clinic in America can guide us to ensure our clinic is a success