Last week the 14th SPAGN Annual Conference was held in Rome. Bringing together over 100 patient advocates from 33 countries, the days were full of interesting education sessions covering all manner of subjects specific to GIST and Sarcoma including: Real-world data and its importance for drug development and re-purposing and to ensure that systems meet […]

On 11th & 12th April we held the first of this years’ PAWS-GIST clinics in Cambridge. Dr Bulusu and the specialist team were joined by oncologist Dr Georgina Wood from UCLH to consult with patients, six of whom were new to the clinic. All expressed their thanks and gratitude for the existence of and work […]

SPAGN (Sarcoma Patients Global Net) invited PAWS-GISTs Patient Director to speak about the importance of patient involvement in Health Technology Assessment (HTA), at the European Society of Medical Oncology (ESMO) conference in Switzerland, as part of the Patient Advocacy track. During the past fourteen years, Jayne has represented GIST patients in numerous NICE and Scottish […]

We had an informative and interesting time at the British Sarcoma Group annual conference, which was held at the Royal Armouries in Leeds this week.     Great to see Dr Bulusu presenting an update on SDH deficient GIST from our work at the PAWS- GIST clinic.   .     In a later session […]

We are collaborating with EU-X-CT who are working to find ways to access clinical trials in other countries EU-X-CT is a multi-stakeholder initiative, aiming to improve patient access to clinical trials in a different country, by collecting all relevant information from EU and non-EU countries on the following aspects of cross-border access to clinical trials. […]

On 1st December the third PAWS-GIST clinic of 2023 was hosted at Addenbrookes hospital in Cambridge. As is customary, the clinic was preceded by a welcome dinner on Thursday evening. An opportunity for patients and their families to meet in a relaxed setting, ready to carry-on new friendships the next day.         […]

GIST Awareness Day (July 13th) is just around the corner and we are excited to invite you to join LRG’s interactive webinar with Drs.: John Glod (NIH), Ramesh Bulusu (Cambridge University Hospitals), Jason Siclick (USCD) on July 13th from 12-1:15 pm ET (That’s 5.00-6.15 pm in the UK). The trio of specialists will be sharing […]

In May The Sarcoma Patients Global Net (SPAGN) and New Horizon’s GIST conferences were held back to back in Dublin. SPAGN’s annual conference brings together sarcoma, GIST and desmoid patient groups, experts, researchers and pharma industry representatives from over 25 countries. The three-day conference focused on research and treatment, advocacy and capacity building. New Horizons […]

Date:  Wednesday 22nd February 2023 Venue: National Army Museum, Royal Hospital Rd, London, SW3 4HT  Aims: This study day will provide an overview of care of teenage and young adult cancer patients, and it will provide a unique opportunity to hear about the lived experience of teenage and young adults from the patient perspective with a […]

Date: Tuesday 26th September 2023 Venue: National Heart Lung Institute, Guy Scadding Building, Dovehouse, St, London SW 3 6 LY The aim of the conference is to provide a state of the art review of multidisciplinary sarcoma care with emphasis on what is new, clinically relevant and controversial in the managements of sarcomas. Topics will […]