GIST, Sarcoma, Cancer and more

GIST patient and patient advocate. Trustee for @GISTCancerUK, sarcoma consumer rep for NCRI , and for EORTC.
Seeking, sharing GIST/sarcoma /cancer news.

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

One of the features of the @GISTCancerUK website is that it contains numerous patient stories. Here's mine:
https://t.co/OFjnEnUvYK

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

At New Horizons 2023 GIST conference, now hearing from Jayne Bressington on her intensely personal story behind the formation and development of the impressive @PAWSGIST clinic for pediatric, adolescent and wild type GIST patients. @GISTCancerUK

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

"Wild Type" is not a single condition - it's at best an umbrella term covering a range of conditions. Full diagnosis needs a more precise analysis of just which one of several Wild Types is present.

[The Life Raft Group @Liferaftgroup]

“Do not accept the diagnosis of Wildtype GIST”. PatholoGIST Dr. Florian Haller presenting on rare #GIST - biology, genetics and profiling. Moderated by Jayne Bressington @PAWSGIST #NewHorizons23

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

The term "junior" doctors is grossly misleading, and needs to be replaced.

[The BMJ @bmj_latest]

"Among the many different audiences for doctors, terminology matters"

@scarlettmcnally discusses renaming junior doctors to improve value, respect, and patient safety
https://t.co/osqc0JhmWD

[The Life Raft Group @Liferaftgroup]

"The main setting for ctDNA is in advanced disease,especially to guide treatment for patients." @DrCeSarcoma during day 2 of #NewHorizons23 along with @JTrentMDPhD , @RobinL_Jones , Markus Wartenberg, David Josephy, Peter Reichardt & Marco Baia (virtual) #GIST #ctDNA

[The BMJ @bmj_latest]

"The legislation wholly changed drug development for rare diseases"

@jsross119 writes on the 40th anniversary of the US Orphan Drug Act
https://t.co/UWcv6l5d0I

[SPAGN @sarcomapatients]

Day 2 of #NewHorizons23 kicks off with a working group discussion on improving treatments for survival AND quality of life, examined from the patient's POV. Featuring Markus Wartenberg, David Josephy, @JTrentMDPhD, @RobinL_Jones, Dr. Peter Reichardt & Marco Baia joining remotely.

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

Final day for @sarcomapatients / New horizons sarcoma /GIST combined conference.
This GIST portion is done as a hybrid venture -part in-person, part on-line.
Not convinced the hybrid format works.

[Union for International #CancerControl @uicc]

Quitting tobacco at any age can make huge a difference, increasing your life expectancy and improving quality of life. #NoTobacco

Find out more ➡️ https://t.co/zEpGmkQd0I

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

A pleasure to chat this morning with Maria and her mom. I thought a child would be finding a conference like this boring - but no, she thinks it's "exciting".

[SPAGN @sarcomapatients]

So moving. Maria is a 14 y/o Ewing Sarcoma patient from Hungary, and the youngest participant in any #SPAGNannualconference. She brought this book about childhood cancer, illustrated by a famous Hungarian artist and translated into English, to gift to #SPAGN. #SPAGN2023

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

Really important to do proper mutational testing. Without it, it's all to easy to waste time and money treating patients with products that will have no effect on the particular mutation present.

[SPAGN @sarcomapatients]

👏👏👏

[SPAGN @sarcomapatients]

Really important conversation on healthcare equality and equity at #SPAGN2023 where several participants raised the issue that solutions and initiatives are often centered on more economically developed countries which don't serve the realities faced in lower income countries.

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

Problem is we now have two excellent new produsts with FDA approval - but pricing so high most people cannot get access.
A new approach to drug pricing/funding is needed. Can governments intervene to fix the problem?

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

@sarcomapatients conference 2023 has ended - but we continue with the New Horizaons GIST conference. First session, with Robin Jones on standard treatments and new products in trial, has morphed into lively discussion on the benefits of further trials.

[The Life Raft Group @Liferaftgroup]

Prof. @Winette_vdGraaf brings attention to the challenges observed in the AYAS(adolescents and young adults) with Sarcomas:

➡️Delays in a diagnosis
➡️Lack of centralized & specialist care
➡️Low access to clinical trial/trial participation

#SPAGN23 #VoicesOfSarcoma

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

@Liferaftgroup @srothschild @sarcomapatients @GistChile Pleased to have chatted with @srothschild over coffee this afternoon - look forward to more discussions on how @Liferaftgroup and @GISTCancerUK can work more closely together.

[Sarcoma UK @Sarcoma_UK]

Day 2 of the 13th @sarcomapatients Annual Conference with opening address from our founder @Amocras on the patient/patient advocate perspective.

Today's packed agenda is here: https://t.co/vdJmGoU47d

[Sorrel Bickley @Sorrel_Bickley]

I was honoured to open the @sarcomapatients annual meeting in Dublin today.

This conference is all about connecting with International friends and colleagues - Working Together, Making a Difference.

#SPAGN2023

[GIST, Sarcoma, Cancer and more @Weldon_GIST]

Currently in Dublin for @sarcomapatients conference 2023. Pleased to have met people from several countries and backgrounds, in discussions over dinner, coffee breaks. @GISTCancerUK.
Some good presentations already, looking forward to more tomorrow.

[GIST Cancer UK @GISTCancerUK]

An insight in to our patient and carer meeting in London today #gistcanceruk #gistcancer #pawsgist @CogentBio @Sarcoma_UK @queering_church @RareCanUK @Cancer52org

[GIST Cancer UK @GISTCancerUK]

Q&A session with Dr Ramesh Bulusu is proving popular #gistcanceruk