Well, it has been a momentous week for the PAWS-GIST Clinic.. On Thursday 30th September and Friday 1st October, we hosted the first clinic since November 2019 after which everything shut down when the pandemic struck… A lot has changed in that time: The hotel that we have used since 2014 has closed down, so […]

As you may remember, in September 2018, GIST Cancer UK and our specialist PAWS-GIST clinic team at Addenbrookes hospital in Cambridge, joined forces with Liferaft Group of America and world specialists as founding members of the International Paediatric and SDH deficient GIST consortium. It is GIST Awareness day on Tuesday 13th July and as part […]

Happy New Year! We have established a new partnership with RareCan which has been founded by our good friend Professor Andy Hall who was instrumental in helping us to establish the National GIST Tissue Bank for GIST research.   You will be aware that GCUK are relentless in our focus to improve treatments and outcomes […]

Today our Patient Director Jayne Bressington participated in the first of a series of RareCan discussions. In this video Jayne and Debbie Binner, Non-executive director of RareCan, discuss their personal experiences of PAWS-GIST and Ewing’s Sarcoma with Professor Andy Hall a Founder and Director of RareCan. Please watch & share this video… By joining RareCan, […]

One of the things patients and their carers tell us they most value about our Patient Meetings is having the opportunity to share experiences with other patients. So when we had to cancel some of this years Patient Meetings due to the pandemic we decided to produce some videos featuring “PAWS-GIST patients talking about their […]

In 2017 GIST Cancer UK approved a research grant application for pathologist Dr Newton Wong to undertake next generation sequencing  (NGS) of wild-type GIST’s to identify therapeutic targets. Earlier this month (July 2020) – Dr Wong’s research paper “Next generation sequencing demonstrates the rarity of short kinase variants specific to quadruple wild type gastrointestinal stromal […]

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 […]