Since the PAWS-GIST clinics started in March 2014, to-date there have been five clinics, attended by 33 patients.
Last week six new PAWS-GIST patients and their families joined us at Addenbrookes Hospital in Cambridge, UK for our 5th Clinic.
It was a privilege to meet with everyone, half of whom had travelled from their homes in the West Country and were joined by others from Coventry, Blackpool & Winchester. It was very interesting to hear their individual stories and understand why they had decided to join the PAWS-GIST initiative.
On this occasion, Dr Bulusu and the specialist team were joined by Dr Robin Jones from the Royal Marsden.
Dr Jones specialises in the treatment of bone and soft tissue sarcomas as well as research involving clinical trials of novel agents and immunotherapy in sarcoma. We are delighted to welcome him to the team.
Professor Eamonn Maher continued his genetic diagnostic testing for inherited forms of GIST and everyone contributed to his research studies into genetic aspects of GIST.
As is customary, we gathered for an informal get together on the previous evening so that everyone could meet and get to know one another before a very busy day of appointments and consultations.
PAWS-GIST is a complex subject but all patients departed the clinic with a clearer understanding about their condition and a recommended plan for their individual situation.
Everyone is, in return, contributing to the body of data that is being collected for the PAWS-GIST research programme which seeks to improve treatment and find a cure for PAWS-GIST, working in collaboration with specialists in Europe & America.
The next PAWS-GIST Clinic will be held in November 2015.
To attend please apply via this website, which also contains a wealth of information for patients, their families and those who are keen to support this ground breaking initiative.
GastroIntestinal Stromal Tumours affect c.900 new patients in the UK each year, c.15% are estimated to be PAWS-GIST patients.
If anyone you know has been affected by GIST please alert them to our clinic and this website (www.pawsgistclinic.org.uk) and also to GIST Cancer UK who are working to help patients and advance understanding of this rare disease www.gistcancer.org.uk.
Our sincere thanks go to all of the specialists involved in the medical reviews, the support team for all their hard work and preparations in advance of the clinic and for the care and expertise delivered by Dr Bulusu, Dr Jones & Professor Maher on the day.
Thank you all very much for your help and dedication and to all who support us.