The UK's only organisation for people with Li Fraumeni Syndrome and related conditions
UK
Joined March 2023
- Tweets131
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- Followers79
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The George Pantziarka TP53 Trust retweeted
Tickets are now available for LFS UK 2026 - the annual conference for people with Li Fraumeni Syndrome, and for health care professionals and researchers working on LFS
eventbrite.co.uk/e/lfs-uk-20…
The George Pantziarka TP53 Trust retweeted
Families in the DMV area, please join us together with @ChildrensNatl for #LiFraumeni syndrome family education day on April 18. Details/register at bit.ly/3O88OWG
The George Pantziarka TP53 Trust retweeted
A MILI Milestone: 40 participants randomised onto the trial!
Thank you to all our recruiting sites for your support of the trial.
@OUHospitals, @GSTTnhs, @CUH_NHS, @nottmhospital, @NHSGrampian, @UHSFT, @Leic_hospital
#TP53 #LiFraumeniSyndrome #LFS
The George Pantziarka TP53 Trust retweeted
🎓Since launch, the REMEDi4ALL Digital Academy has become a go-to resource for the drug repurposing community:
📘10 modules
🧠200+ topics
🌍170+ learners from 50+ countries
🔗 loom.ly/IeBJ9No
The George Pantziarka TP53 Trust retweeted
The MILI site team based in Leicester Royal Infirmary speak on what this study means to them.
Find out more about MILI here: mili.octru.ox.ac.uk/
#LFS #TP53 #LiFraumeniSyndrome @Leic_hospital
The George Pantziarka TP53 Trust retweeted
We’re here! Really excited to hear about advances and opportunities at the CRUK Cancer Prevention Research Conference, which is being co-chaired by OCTO Director @sarah_blagden
The George Pantziarka TP53 Trust retweeted
Presented at @ASCO this week, @DanaFarber researchers shared findings on whole-body MRI as a crucial test modality for individuals with Li-Fraumeni syndrome.
The prospective cohort study found annual whole-body MRIs contribute substantially to detection of asymptomatic localized cancers among individuals with LFS and should become part of standard care, supported by practice guidelines and covered by insurance.
#lifraumenisyndrome #asco25 #lifraumeni Learn more at bit.ly/3FMnxlT
The George Pantziarka TP53 Trust retweeted
🚨Last chance to apply for the REMEDi4ALL Hackathon!
Join an inspiring, hands-on event to tackle real-world drug repurposing challenges.
📍Montserrat, Barcelona | 6–10 October 2025
Only 1 week left to register – applications close 10 June.
🔗Apply now: loom.ly/2V3NnfI
The George Pantziarka TP53 Trust retweeted
#iDR25 – That’s a wrap!
🌍 300+ joined us in Amsterdam for two days of panels, posters, and powerful discussions on smarter routes to repurposed medicines.
👥 Thanks to our speakers and attendees for your insights, energy & contributions.
📖Highlights: remedi4all.org/idr25-wraps-u…
The George Pantziarka TP53 Trust retweeted
It's been an amazing first day at #iDR25 exploring how we can unlock the potential of existing drugs for patient benefit. It's the poster presentations now, the #REMEDi4ALL booth is buzzing, and we're all set for Day 2!
The George Pantziarka TP53 Trust retweeted
Patient organisations on the panel sharing their experience in repurposing medicines - the hurdles and the path to success. On stage: @CLOVESSyndrome, @Mission_Cure, @GP_TP53_Trust, Volwassenen, Kinderen en Stofwisselingsziekten (VKS) and Lorna Pender.
The George Pantziarka TP53 Trust retweeted
A MILI Milestone: 30 participants randomised onto the trial!
Thank you to all our recruiting sites for your support of the trial.
@OUHospitals, @GSTTnhs, @CUH_NHS, @nottmhospital, @NHSGrampian, @UHSFT, @Leic_hospital
#TP53 #LiFraumeniSyndrome #LFS
The George Pantziarka TP53 Trust retweeted
In partnership with @BostonChildrens and @DanaFarber, the LFSA 5th International Youth Workshop will be held August 15-17, 2025.
A cornerstone of Legacy of Hope, this unique experience for youth with Li-Fraumeni syndrome (LFS) empowers them to make lifelong peer connections. Attendees gain tools to navigate LFS with confidence and enjoy an engaging weekend in Boston filled with education and inspiration, interacting with top researchers, providers and young adult mentors.
LFSA provides hotel accommodation and meals during the program, participants are responsible for their travel. Space is limited, please complete the interest form at lfsassociation.org/2025-yout…
The George Pantziarka TP53 Trust retweeted
Women with Li-Fraumeni syndrome have a higher risk of developing breast cancer - early detection saves lives. This LFSA Legacy of Hope webinar will focus on breast cancer screening, including why it's important, how it works, risks, who should get screened and types of tests available.
Join Renata Sandoval, MD, MSc, PhD of @hsiriolibanes for "Breast Cancer Screening & LFS" on Monday, April 28, 3:00 PM EST.
Sign up at bit.ly/4iCMY6J
The George Pantziarka TP53 Trust retweeted
🧬 Genetic Predisposition in Sarcoma
Up to 20% #sarcoma may be assoc. with predisposition genes
In our 📝 we review evidence on genetic predis. & how it may influence Rx decisions & management inc. surgery, radiotherapy, systemic Rx & surveillance
1/4
thelancet.com/journals/eclin…
The George Pantziarka TP53 Trust retweeted
We are proud to announce a new co-funded research project with @cclguk 🧪
The study, led by Dr Pardo @imperialcollege, will replicate osteosarcoma cells travelling through the bloodstream to understand how this aggressive bone cancer spreads.
Visit: ow.ly/3vx250VACeu
ALT A 3D illustration of cancer cells migrating to other tissues and organs, creating metastasis. At the bottom third of the image is the Bone Cancer Research Trust logo to the left and CCLG's logo to the right.
The George Pantziarka TP53 Trust retweeted
A person with LFS carries a pathogenetic variant in their TP53 gene associated with an increased risk of cancer. To find out more about LFS and current research, including the MILI clinical trial:
MILI tinyurl.com/nu3w4ba3
@GP_TP53_Trust @OxfordCancer #LFS
The George Pantziarka TP53 Trust retweeted
The MILI trial is pleased to announce that our 7th site, University Hospitals of Leicester NHS Trust, is now open to recruitment!
@Leic_hospital @GP_TP53_Trust
#TP53 #LiFraumeniSyndrome #LFS
The George Pantziarka TP53 Trust retweeted
The MILI trial is pleased to announce that our 6th site, University Hospital Southampton NHS Foundation Trust, is now open to recruitment!
@UHSFT @GP_TP53_Trust #TP53 #LiFraumeniSyndrome #LFS
