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

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/...

#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

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. 💜

🚨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

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.

Pediatric TGCT is ultrarare, and this study represents the largest analysis to date of 121 peds pts and a comparison to adult TGCT. It’s a meaningful milestone for me as a researcher and former peds pts. 📖 doi.org/10.1186/s13023-026-04231-7

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

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 👏🏻👏🏻

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?...

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

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....

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

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

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 !

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

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

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

Check out Abstract #11544 👀 IKYKYK 👏🏻👏🏻 @ascocancer.bsky.social

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....

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!

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

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....

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 🙌🙌

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....

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. 🫶🏻

See you in 😎 ☀️ Chicago for some #TGCT at #ASCO25 @ascocancer.bsky.social

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

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

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

#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… #LightUpForRarere

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 🫶🏻

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

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

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

Waiting for my field’s community to move to #bluesky like

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

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

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