13th July is GIST Awareness Day! Please help us to reach everyone whose lives are touched by GIST Cancer so they can benefit from the help and support that our GIST Cancer UK community offers. Please click this link. Raising awareness and being aware – here are some more inspiring stories: Jo’s Story   Pippa’s […]

We are very pleased to hear that NICE has approved the Roche drug Entrectinib (Rozlytrek), for use via the Cancer drug fund (CDF) in England by adults and children 12 years and older, who have advanced NTRK (Neurotrophic Tyrosine Receptor Kinase) fusion-positive solid tumours and no satisfactory treatment options. Eligible patients will have access to […]

We are very pleased to announce that NICE has approved the Bayer drug Larotrectinib (Vitrakvi) for use via the Cancer drug fund (CDF) in England for adults and children who have failed other treatment options and whose tumours test positively for the rare NTRK fusion (Neurotrophic Tyrosine Receptor Kinase fusion). Described as an histology agnostic […]

The 17th PAWS-GIST clinic was held at Addenbrookes in Cambridge on 28th & 29th November 2019. Seven patients and their carers joined us for a very helpful clinic as evidenced by the feedback that was received: “I hadn’t realised how much I was holding onto in the weeks before the clinic. Chatting to others helped […]

November continued to be a very exciting month for our PAWS-GIST alliance. From the NCRI awards ceremony in Glasgow we travelled south to Cambridge. Here we met with representatives from Groundwork UK and Tesco who presented us with a cheque for £10,000 which has been awarded to PAWS-GIST as a result of the “Tesco Centenary Grant Award”. This fantastic […]

We are really excited to announce that our PAWS GIST (Paediatric Adolescent Wild-type & Syndromic GIST) alliance has been awarded the National Cancer Research Institute‘s “Collaboration award”. This award recognises our unique European multidisciplinary team of patients, doctors, specialists and researchers who are collaborating to improve treatments and working to find a cure for PAWS-GIST cancer. The nominations were reviewed […]

PAWS-GIST Clinics 15 & 16 We have hosted two PAWS-GIST clinics at Addenbrookes Hospital in Cambridge so far this year, one in April and one on 6th September which was our sixteenth clinic since we opened the clinic in 2014. Eight, then seven patients and their carers attended our April and September clinics respectively, some […]

Since the start of PAWS-GIST in 2010 or aim has always been to stimulate research for improved treatments and a cure. It has taken a while as we needed first of all to set up The National GIST Tissue Bank, The PAWS-GIST clinic and then locate some researchers willing to work with us. However our […]

This weekend our PAWS-GIST clinic was recognised by Sarcoma Patients EuroNet (SPAEN) with an “Advocacy in Action” award. The awards recognise projects that take action to improve situations, and fulfil unmet medical needs. Thank you to Sarcoma Patients EuroNet (SPAEN) for recognising our work, and thank you to Dr Bulusu, our team of specialists, Addenbrookes […]

Last week we held the fourteenth PAWS-GIST clinic at Addenbrookes Hospital in Cambridge. As is customary we met for dinner on the previous evening to introduce everyone to each other in an informal environment. It was a very enjoyable evening and led us in to next days clinic on more familiar territory. During the evening […]