Why? It's not only the Met where racism is a problem.

Now at the GIST Cancer UK patients' information day in London. We're the leading patient advocacy group in UK, driven entirely by and for patient and carer volunteers. These days are valuable for what we learn from noted clinicians, and for mutual help and support.

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

An insight in to our patient and carer meeting in London today #gistcanceruk #gistcancer #pawsgist Cogent Biosciences Sarcoma UK @queering_church RareCan Cancer52 also on Bluesky @cancer52org.bsky.social

I was honoured to open the SPAGN annual meeting in Dublin today. This conference is all about connecting with International friends and colleagues - Working Together, Making a Difference. #SPAGN2023

Day 2 of the 13th SPAGN Annual Conference with opening address from our founder Roger Wilson CBE on the patient/patient advocate perspective. Today's packed agenda is here: sarcoma-patients.org/annual-confere…

Prof. WinetteVanDerGraaf 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

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

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.

Quitting tobacco at any age can make huge a difference, increasing your life expectancy and improving quality of life. #NoTobacco Find out more ➡️ bit.ly/3LSr8zn

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.

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".

Final day for SPAGN / 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.

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, Jon Trent, MD, PhD, Robin Lewis Jones, Dr. Peter Reichardt & Marco Baia joining remotely.

"The main setting for ctDNA is in advanced disease,especially to guide treatment for patients." César Serrano García during day 2 of #NewHorizons23 along with Jon Trent, MD, PhD , Robin Lewis Jones , Markus Wartenberg, David Josephy, Peter Reichardt & Marco Baia (virtual) #GIST #ctDNA

"The legislation wholly changed drug development for rare diseases" Joseph Ross writes on the 40th anniversary of the US Orphan Drug Act bmj.com/content/381/bm…

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

"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.

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. GIST Cancer UK