iiinova — where your digital self keeps evolving

Sydney Stern, PhD @stern-sydney.bsky.social · 13/05/2026

Learn more about #TGCT and TGCT Support 🦓: touchoncology.com/insight/sp-s... Thank you for the feature!

Sydney Stern, PhD @stern-sydney.bsky.social · 03/04/2026

We’re proud to share the UK TGCT Consensus Guidelines are now live on Bone & Joint Open, alongside a patient-friendly version on our site. Thank you to @BoneJointOpen and all the authors! Medical: boneandjoint.org.uk/Article/10.1... Patient: www.tgctsupport.org/uploads/1/3/...

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Sydney Stern, PhD @stern-sydney.bsky.social · 14/02/2026

#RepresentationMatters 🦓 #RareDiseases aren’t always visible. I live with #TGCT, a rare, unpredictable joint tumor that causes pain, stiffness & mobility limitations. And yet, 1 in 10 Americans has a rare disease. Rare ≠ alone. #RareDisease #ShowYourStripes #PVNS

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Sydney Stern, PhD @stern-sydney.bsky.social · 11/02/2026

Happy International Women and Girls in Science Day 🧬 For years, I wondered what makes someone a “scientist.” A PhD? Publications? A lab coat? If you’re asking bold questions and seeking answers, you already are one. Science needs women. Science needs girls. Science needs diverse voices. 💜

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Sydney Stern, PhD @stern-sydney.bsky.social · 04/02/2026

🚨Join us March 6 at 12 PM ET for a webinar that breaks down the latest publication from the TGCT Support Registry 📊✨ This study is the first and largest of its kind exploring the real-life burden of TGCT in pediatric patients 🦓 Register: bit.ly/TGCT-RegistryInsights

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Reposted by Sydney Stern, PhD

Patrick McKenzie @patrickmckenzie.bsky.social · 03/02/2026

Can't imagine what it'd be like to deal with TGCT as a child. Proud to be involved in this work characterizing the pediatric patient experience.

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Sydney Stern, PhD @stern-sydney.bsky.social · 27/01/2026

It’s #ASCO2026 submission day! May everyone get their abstracts in 🙏 excited for another #TGCT and #rareoncology filled ASCO #TGCTSupport

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Sydney Stern, PhD @stern-sydney.bsky.social · 26/09/2025

When that #CTOS2025 email hits 🎉🎉🎉🎉🎉 Very excited to represent TGCT Support at CTOS and present on #TGCT. I’d like to thank my co-authors 👏🏻👏🏻

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Sydney Stern, PhD @stern-sydney.bsky.social · 18/08/2025

Though the names Tenosynovial Giant Cell Tumor (#TGCT) & Giant Cell Tumor of the Bone (GCTB) sound similar, these are distinct diseases! Anne’s story underscores a critical need for education. about the differences between GCTB & TGCT 📣Check it out: youtu.be/VDmNQwUNFjo?...

youtu.be

Anne Kable's Journey from GCT to TGCT

YouTube video by TGCT Support

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Sydney Stern, PhD @stern-sydney.bsky.social · 03/07/2025

July is Sarcoma Awareness Month — and we’re claiming space for #TGCT! TGCT is a connective tissue tumor that, like so many living with it, doesn’t quite fit neatly into a box. Join us in spreading awareness one story at a time! #TGCTStrong #sarcomaawareness Learn more at TGCTSupport.org

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Sydney Stern, PhD @stern-sydney.bsky.social · 27/06/2025

When your first summer research fellow publishes 🥰 new level of pride in a project. Check it out below 📖 👇🏻 The Evaluation of Interactions Between Multiple Intrinsic and Extrinsic Factors Reported in Labeling for FDA‐Approved Drugs - Bailey - accp1.onlinelibrary.wiley.com/doi/full/10....

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Sydney Stern, PhD @stern-sydney.bsky.social · 01/06/2025

So proud, for my first #ASCO25, to present work on pediatric #TGCT on behalf of TGCT Support ☺️ grateful for the opportunity to raise awareness

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Reposted by Sydney Stern, PhD

Dr. Herbert Loong @herbloongmd.bsky.social · 31/05/2025

Thanks @stern-sydney.bsky.social! I am humbled and credits should go to you for all that you are doing for the #TGCT community and beyond! Looking forward to seeing your presentation! 😀 #CTOSTweeTOS #Sarcoma

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Sydney Stern, PhD @stern-sydney.bsky.social · 31/05/2025

Attending #ASCO25? Be sure to visit poster board 📋27 at 9:00 AM ⏰ Did you know that pediatric pts w/ diffuse #TGCT undergo an average of 3.4 surgeries? These young pts need coordinated, MD care to manage the long-term physical + emotional impact of this disease. Learn more !

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Sydney Stern, PhD @stern-sydney.bsky.social · 30/05/2025

Snagged a selfie with the famous @herbloongmd.bsky.social before #ASCO25! Thank you for all you do Dr Loong!

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Sydney Stern, PhD @stern-sydney.bsky.social · 29/05/2025

Check out more findings from our pediatric #TGCT real-world evidence at #ASCO25 in T-Minus 2 days ! Don’t miss our poster 📍 Hall A, sarcoma session 📆 Saturday, May 31st, 9:00 - 12:00 pm 📋 27 #RWE #pediatric #oncology

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Sydney Stern, PhD @stern-sydney.bsky.social · 26/05/2025

As you make your #ASCO25 schedules, visit our poster on Pediatric #TGCT, an ultra-rare, under-recognized neoplasm in desperate need of progress. Pediatric TGCT mimics the adult form but lack the therapeutic advancement. Sarcoma poster @ 9:00-12:00pm CDT on May 31st, 2025 @ascocancer.bsky.social

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Sydney Stern, PhD @stern-sydney.bsky.social · 06/05/2025

Sit back. Relax. And celebrate Cinco de Mayo by learning about our #TGCT registry: youtu.be/flaM6eRCgd4?... Read the paper here: www.tandfonline.com/doi/full/10....

youtu.be

TGCT Support's Patient Registry Overview

YouTube video by TGCT Support

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Sydney Stern, PhD @stern-sydney.bsky.social · 01/05/2025

Excited to be attending @ASCO for the first time ever AND presenting about #TGCT in pediatric patients #ASCO25 Can’t wait to see everyone in ☀️ Chicago at the end of the month!

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Sydney Stern, PhD @stern-sydney.bsky.social · 11/04/2025

We can cross Dr Bill Tap presenting our TGCT registry publication off our bucket list!! Read it here: www.tandfonline.com/doi/full/10....

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Reposted by Sydney Stern, PhD

Patrick McKenzie @patrickmckenzie.bsky.social · 08/04/2025

SO SO excited to share some new collaborative work - a departure from the usual and especially close to my heart. As a patient it’s hugely empowering+rewarding to help inform treatment this awful rare disease www.tandfonline.com/doi/full/10....

tandfonline.com

Localized and diffuse tenosynovial giant cell tumor: real-world results from a patient observational registry

Tenosynovial Giant Cell Tumor (TGCT) is a rare, locally aggressive neoplasm that adversely impact patients’ physical function and quality of life (QoL). This cross-sectional analysis leverages real...

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Reposted by Sydney Stern, PhD

Patrick McKenzie @patrickmckenzie.bsky.social · 08/04/2025

So amazing to be part of a patient community that’s so eager to contribute to research, and cool to work with coauthors who are care providers and deeply invested in patient outcomes. And of course grateful for our leader + advocate + fellow patient @stern-sydney.bsky.social and TGCT Support 🙌🙌

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Sydney Stern, PhD @stern-sydney.bsky.social · 08/04/2025

I was asked what accomplishment I was most proud of recently 🥹 this. Learn more about the lived experience of #TGCT - from symptom onset, diagnosis, treatment, & thereafter. TGCT is a debilitating and impactful disease from the voice of patients. Read: www.tandfonline.com/doi/full/10....

tandfonline.com

Localized and diffuse tenosynovial giant cell tumor: real-world results from a patient observational registry

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Sydney Stern, PhD @stern-sydney.bsky.social · 27/03/2025

Today, I received the plaque for my award back in November. It was a nice reminder that my efforts are appreciated. Here’s to advancing rare disease research and to the FDA’s mission of protecting & promoting public health by ensuring the safety + efficacy of the medicines we all depend on. 🫶🏻

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Sydney Stern, PhD @stern-sydney.bsky.social · 24/03/2025

🤞🏻🤞🏻#ASCO25 here we come!!! Hopefully bringing #TGCT patient powered research to ☀️ Chicago!

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Sydney Stern, PhD @stern-sydney.bsky.social · 08/03/2025

To all the strong, resilient, and brilliant patients, caretakers, scientists, doctors, nurses who paved the way - happy #InternationalWomenDay “I raise my voice - not so I can shout, but so that those without a voice can be heard” - Malala Youzafzai

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Sydney Stern, PhD @stern-sydney.bsky.social · 02/03/2025

Thank you so much @ascptclinpharm.bsky.social for raising awareness for both #RareDiseaseDay and our paper! Check it out below:

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Sydney Stern, PhD @stern-sydney.bsky.social · 28/02/2025

#RareDiseaseDay: 7,000+ rare diseases, ~95% lack treatments, 30% children never see their 5th birthday. GM1 & GM2 gangliosidosis are fatal with no approved therapy. Read our analysis on biomarker challenges & opportunities: ⬇️ 🔗 ascpt.onlinelibrary.wiley.com/doi/full/10.11… #LightUpForRare

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Sydney Stern, PhD @stern-sydney.bsky.social · 14/02/2025

Rare diseases may not always be visible. #TGCT is a good example of this! Many symptoms are only noticeable to the pt experiencing them. For this #RareDiseaseDay, there are many deserving diseases to learn about. Take a moment to learn about TGCT at TGCTSupport.org 🫶🏻

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Sydney Stern, PhD @stern-sydney.bsky.social · 11/02/2025

Science and medicine must reflect the people they serve. Representation matters. Happy International Women and Girls in Science Day and Happy Rare Disease Awareness Month 🧬🔬🥼 #internationalwomeninscienceday

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Sydney Stern, PhD @stern-sydney.bsky.social · 27/01/2025

Hoping to bring more #TGCT on behalf of TGCT Support to @ASCO #ASCO2025 🧫🧬🔬🥼 The future is science.

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Sydney Stern, PhD @stern-sydney.bsky.social · 30/12/2024

In a world of negativity, division, and self-destruction, we could all strive to be a little more like #JimmyCarter

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Sydney Stern, PhD @stern-sydney.bsky.social · 21/11/2024

Watch the experts ⬇️⬇️⬇️ ReQuote from 🙅🏻‍♀️: Watch William D. Tap, MD, Nicholas M. Bernthal, MD, FAOA & Emanuela Palmerini, MD, PhD discuss the latest #TGCT updates following #CTOS2024 by @peerview.bsky.social in collab with TGCT Support- to participate, visit: PeerView.com/TGCT24

peerview.com

MDADI

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Sydney Stern, PhD @stern-sydney.bsky.social · 17/11/2024

It was a dream come true getting to present the #TGCT registry data (n=497) demonstrating a high pt burden of TGCT. Education efforts among clinicians is needed to facilitate early diagnosis, effective treatment, better treatment algorithms to reduce the impact of TGCT on patient lives. #CTOS2024

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Sydney Stern, PhD @stern-sydney.bsky.social · 12/11/2024

Nice to see some of my favorite accounts have already moved over. Hoping #MedSky #WomeninMedicine takes off. 👏🏻👏🏻👏🏻 🦋

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