GCUK Patient Meetings - International Reports 2007 to 2018

A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!

2018: New Horizons GIST Conference in Vienna, Austria

New Horizons GIST 2018 Participants

New Horizons GIST 2018 Participants

For years, there have been just three lines of drug treatment available to GIST patients (imatinib, sunitinib, and regorafinib). In addition, some patients have been able to access additional products as part of a range of clinical trials but to-date, none of these further trials have led to approved medications becoming available. That could be about to change. Some of the clinicians present were clearly and explicitly "very excited" about some of the products currently being tried as third and fourth line treatments. In addition to new and improved drugs, there are also additional forms of treatment potentially becoming available in the future. ...Read Report

2017: New Horizons GIST Conference in USA

Topics discussed included:

  • Emerging Therapies and Ongoing Trials in Advanced GIST
  • Circulating Tumor DNA in GIST and its Implications for Treatment
  • Innovative Approaches to Prolong Survival: Case Studies
  • Access to GIST Treatment in Low and Middle Income Countries
    ...Read Report

2016: New Horizons GIST Conference in Barcelona, Spain

The New Horizons GIST Patient Advocacy Roundtable:

Improving access to treatment and quality of care through global exchange. ...Read Report

2016: 7th SPAEN Annual Conference, September 8-10, 2016 in Warsaw, Poland

The three conference days were full of learning about medical topics ranging from pathology to liquid biopsy in GIST, to reconstruction after bone surgery in bone sarcoma and also about sharing experience.

This year SPAEN became an international association further to recent connections with GIST and Sarcoma advocacy groups in Africa and India....Read Report

2014: New Horizons takes place in Zurich, Switzerland

(reported by Sara Rothschild)

Over the course of the three days, participants attended sessions that dealt with key topics including: GIST Overview and Diagnosis, Localized Operable Primary Tumors, Knowledge for Advocacy, Metastatic Advanced Disease, Progression of Advanced Disease under Drug Treatment, Quality of Diagnosis, Treatment and Care and How to Work with the Media... ...Read Report

2013: New Horizons makes a splash in Miami, USA

(reported by Diana Nieves)

New Horizons Participants in Miami, Fla.

New Horizons Participants in Miami, Fla.

The main topic of this conference was the clinical trials process. To ensure that all conference participants had some basic knowledge of the clinical trials process, the steering committee provided a Clinical Trials 101 workshop led by Jerry Call, Science Director and Jim Hughes, Clinical Trials Coordinator, both from the Life Raft Group.... ...Read Report

2012: 9th Pediatric & Wild-type clinic, National Institute of Health, Washington DC, USA

(reported by Becky Bensenhaver)

Following discussion of the plans for upcoming treatment options, Dr. Helman explained that now, for the first time, they plan to have Pediatric and Wildtype GIST treatments... ...Read Report

2011: SPAEN Meeting Berlin, Germany

(reported by Jayne Bressington)


  • Dr Ramesh Bulusu - an update on the treatment of PAWS GIST
  • Dr Peter Reichart - an insight into new treatment options
  • Dr Dirk Strauss - the need for specialist sugical expertise when dealing with sarcomas

This was the second annual conference for organisations representing patients with Sarcomas or Desmoids tumours. It is supported by a coalition of seven pharmaceutical companies; Bayer, GSK, MSD/Merck, Novartis, Pfizer, Pharmamar and Takeda. The conference was attended by patient and advocates from all over Europe and was at stages divided into three tracks; GIST, Sarcoma and Desmoid so that we could concentrate specifically on our specialism. There were some very interesting presentations both from specialists and patients along with workshops where we shared ideas on innovations, best practice and useful resources in the different European Groups... ...Read Report

2010: New Horizons in Vienna, Austria

(reported by Stacey McAully)

... there are around 5000 to 10,000 new cases of GIST every year. Many people can live with micro-GISTs all their lives and not even know but in GIST patients something must have been triggered to cause the tumour to become aggressive and grow. Some of these factors are BRAF mutations or insulin related growth... ...Read Report

2008: Paediatric GIST Clinic in Bethesda, Maryland, USA

(reported by Stefanie Peyk)

Paediatric GIST Attendees

Paediatric GIST Attendees

Paediatric GIST is an extremely rare sub-variant of GIST, which in many respects differs from adult GIST: paediatric GIST is more prevalent among girls and young women than among boys and young men... ...Read Report

2008: New Horizons in Bavenno, Italy

(reported by Judith Robinson)

The Gran Dino Hotel and Conference Centre Baveno

The Gran Dino Hotel and Conference Centre Baveno

At the conference there were some very interesting presentations about research on Gist and on possible new ways of treating it. A number of new targeted drugs are in the pipeline. Perhaps the most interesting thing for us was the development of ideas about the need to use blood tests to measure Glivec serum levels... ...Read Report

2007: New Horizons in Bad Nauheim, Germany

The Bad Nauheim Conference Centre

The Bad Nauheim Conference Centre

The thinking behind this conference, organised and funded by Novatis, is that Glivec is used for both CML (Chronic Myeloid Leukæmia) and GIST. Some sessions were for everyone, and some were in two groups, for CML and for GIST representatives. There were about 90 representatives from 24 countries, and the very warm welcome from the German hosts... ...Read Report