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 GIST is a great opportunity where patient advocates representing the Global GIST Patient Community come together to share knowledge and learn from the experts’ presentations.
This year Professor Robin Jones, Dr Ramesh Bulusu and Jayne Bressington were invited give presentations from the UK.
Dr Bulusu’s presentation formed part of the conference session entitled “Rare and very rare GIST subtypes”. This presentation was preceded by Professor Florian Haller who provided an expert pathologists’ perspective on the rare forms of GIST. Jayne moderated this session and was asked to explain the benefits of how “working with experts” has enabled the establishment of infrastructure in the UK to support the PAWS-GIST clinic and stimulate research. Finally Dr John Glod who leads the Pediatric and Wild-type GIST clinic in the USA presented about their work in America.
The links below will take you to first of all to the whole conference session and then is followed by links that take you to the individual presentations and then the Q & A session that was held at the end:
LINK to Rare and very Rare GIST subtypes presentations & Q &A
video start to 17.18 mins – Professor Florian Haller – PatholoGIST from the University Hospital Erlangen, Erlangen, Germany – an overview of the biology, genetics and profiles of the rare and very rare GISTs
from 17.29 – 57.51 mins – Dr V. Ramesh Bulusu – Consultant Clinical Oncologist MD, MRCP, MSc, FRCR (Oncology), Clinical Lead, PAWS-GIST Clinic, Addenbrookes Hospital, Cambridge, UK. –
The current scientific and expert evidence about How to treat rare GIST sub-types.
from 57.52 – 1.20 mins – Jayne Bressington – Mother of a Paediatric,SDH deficient GIST patient, Patient Director of PAWS-GIST UK experience of Patients and Experts working closely together in Rare GIST Subtypes – from 57.52 – 1.20 minutes
from 1.20 – 1.47 min Dr John Glod – Clinical Director NCI Center for Cancer Research Pediatric Oncology Branch in the USA. – US experience of patients and experts working closely together –
Questions & Answers – from 1.48 – 2.03 minutes
We are very grateful to the organisers of these conferences. So much was learned and shared and it was great to be able to meet in person again.
