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We presented at the CDC’s ICD-10-CM meeting on September 16, and we need your help to support our proposal. TGCT deserves a single unifying code that reflects its biology. The current codes are outdated and classify “PVNS” as a muskuloskeletal or inflammatory condition. Not as a tumor disease. This does not align with current clinical practice or the needs of our community. Learn more at TGCTSupport.org/news @the_sarcoma_doc @alysia_kemp_md @ctosociety

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🌊 Today, we made a small wave in the direction of positive change.

On September 16, 2026, Sydney Stern, PhD, and Alysia Kemp, MD, presented a proposal to the ICD-10-CM Coordination & Maintenance Committee to update how tenosynovial giant cell tumor (#TGCT) is coded and classified.

The proposal would create a unifying TGCT diagnostic code in the Neoplasm chapter, aligning ICD-10-CM coding with the known biology and contemporary classification of the disease.

It would also add a note under the historical term pigmented villonodular synovitis (#PVNS), making the disease no longer incorrectly classified as a primary inflammatory condition or in the musculoskeletal chapter.

This has been a patient advocacy–initiated effort, bringing together patients, clinicians, researchers, and other stakeholders, with support from the Connective Tissue Oncology Society (@ctosociety), Musculoskeletal Tumor Society (@msts_ortho), and leading TGCT specialists like Drs @alysia_kemp_md (@the_sarcoma_doc), Gabriel Tinoco, Nicholas Bernthal, and Matthew DiCaprio.

🌊 We are proud of this moment but this is just the beginning.

Now, we need your voice. Patients. Clinicians. Researchers. Payers. We need you.

We’ll soon share instructions for how you can support the proposal and make your voice heard to the CDC.

Stay tuned. Together, we can help ensure TGCT is accurately recognized.
#TGCTStrong

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We are keeping the education and awareness going even after this #TGCT & Sarcoma Awareness Month by giving our first presentation at an orthopedic conference! 🦓🦓

We will be presenting at the 23rd General Meeting of the International Limb Salvage (ISOLS_association) conference in Vienna, Austria, on September 26, 2026. ISOLS brings together global leaders in musculoskeletal oncology, limb salvage, and orthopaedic oncology to advance research and improve patient outcomes worldwide.

📍 Session 3.13: TGCTs
🗓️ September 26, 2026
⏰ 10:00–11:00 AM CEST
📌 Vienna, Austria

On behalf of our co-authors @sydstern @alysia_kemp_md/ @the_sarcoma_doc , Jennifer Halpern, Jenrik Hardes, and @rothschild.sara, our presentation, “The Impact of Arthroplasty on Patient-Reported Outcomes in Diffuse Tenosynovial Giant Cell Tumor: A Real-World Propensity-Score-Matched Analysis,” will share findings from the #TGCTSupport Registry examining the long-term impact of arthroplasty on physical function, pain, and quality of life among patients living with diffuse #TGCT. The TGCT session will be chaired by internationally recognized experts and will feature an introductory lecture from Nicholas Bernthal on targeted therapies for TGCT.

We are grateful to the patients who continue to participate in the TGCT Support Registry. You make this work possible and shape the future of this disease. ❤️‍🩹 stay tuned for more! #tgctstrong

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Tre mesi fa entravo in sala operatoria.

Oggi va bene, ma ogni passo, anche se “normale”, è qualcosa per cui essere grata, che bello poter camminare.

Un grazie al Dott. R. Piana e all’équipe di Orto Onco del CTO di Torino per avermi ri-costruito la gamba una seconda volta.

Un grazie a Paola, la mia compagna di stanza, che sorrideva ogni giorno anche per me.

Un grazie a chi è stato al mio fianco, giorno e notte, sostenendomi senza mai farmi sentire sola nonostante fossi lontana da casa.
Grazie, davvero.

daje

#hipsurgery #gigantcelltumor #healingjourney #surgery #hospital

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For #ASCO26, we’re proud to share our latest abstract from the #TGCT Support Patient Registry 🦓

What did we find? 👇
Patients living in more disadvantaged areas were:
▪️ Less likely to receive systemic therapies
▪️ More likely to undergo joint replacement surgery
▪️ More likely to experience tumor recurrence after surgery

We also found something important: access to multidisciplinary expert care matters‼️

When patients had access to multidisciplinary teams (MDTs), disparities in treatment was greatly reduced:
▪️ Odds of receiving systemic therapy improved
▪️ Odds of radiation and joint replacement decreased

However, patients in more disadvantaged communities still experienced higher recurrence rates overall.

What does this mean? 🏡

Where you live can influence your access to specialized care and ultimately impact your outcomes with TGCT. This research highlights the importance of improving access to multidisciplinary experts and reducing barriers to care for patients nationwide. Every patient deserves access to experienced TGCT care regardless of zip code. 🌎 #PVNS #TGCTStrong #Tumor

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Check out the newest episode of Herding Hope: TGCT & Zebra Talk! In this powerful conversation, Kelsey shares her journey living with TGCT and the profound ways it impacted her emotional well-being. From navigating isolation and loss of independence to facing financial and personal instability, her story reflects the realities so many patients experience but few openly discuss.
With honesty, resilience, and grace, Kelsey shines a light on the emotional side of TGCT while reminding others they are never alone in their journey. Her voice is empowering, relatable, and deeply important. This is an episode you won’t want to miss. 🦓

Spotify and 🍎 link in bio!

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We are so excited to announce that we are presenting at the 23rd International Society of Limb Salvage (ISOLS) annual conference in Vienna, Austria 🇦🇹 📣 This is our FIRST talk at a primarily orthopedic conference and we are honored to amplify the patient voice in research 🔬

Stay tuned to learn more! #tgct #ISOLS #pvns #orthopedics

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🇬🇧 best practices coming atcha like! Check it out on our website! #pvns #tgct #tgctstrong #tumor #raredisease

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TGCT doesn’t just impact adults, and it’s time research reflect that. Check out our research at TGCTSupport.org/our-research. #TGCT #PVNS #pediatrics #tumor #kneepain

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Follow for more research at TGCTSupport.org/our-Research 👩🏻‍🔬🥼🦵🏻 #TGCT #PVNS #TGCTStrong #raredisease #mobilitymatters

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A little over a week ago, TGCT Support’s very own Sydney Stern had the opportunity to present on the role of patient advocacy in harmonizing consensus in #TGCT management on behalf of TGCT Support at the British Sarcoma Group 2026 conference. Thank you to Sarah Pratap for organizing such an important meeting and for the invitation to speak.

In July 2024, we set out to address bottlenecks we were noticing in TGCT care within our UK patient community. While not unique to the UK, patients frequently experience delays in diagnosis, misdiagnosis, and potentially unnecessary treatments from consultants unfamiliar with the disease. We also observed inconsistencies in nomenclature and subtype classification, and patients with recurrent, atypical, or diffuse TGCT often experienced obstacles to reach multidisciplinary teams at sarcoma centres.

Using insights from our patient registry, we identified leading consultants with real-world experience in TGCT and brought them together to work toward consensus. What followed was a highly collaborative process including an initial meeting in September 2024, a structured Delphi process with multiple iterations, and a second alignment meeting in July. The final result is a consensus manuscript outlining practical recommendations from some of the most respected TGCT experts.

This work highlights the power of patient advocacy, not only in identifying systemic challenges, but in convening experts, integrating lived patient experience, and helping drive timely solutions.

With the manuscript now accepted, we are excited to see it move forward with publication, securing endorsement and disseminating these recommendations across the UK. 🇬🇧

Thank you to the experts who made this truly possible: Robin Jones Vasilis Karavasilis Sarah Pratap Beatrice Seddon Mahbubl Ahmed Jonathan Perera Guy Morris Rob Ashford Will Aston C.R. Chandrasekar Jonathan Stevenson Dina Hood Elaine Richardson Sam Hackett Sarcoma UK Sara Rothschild The Life Raft Group. An additional shoutout to Lucy Dean, Abigail McCarthy, and Debbie Artis for their physiotherapy insights.

#TGCTStrong #PVNS

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This past year has honestly been a year of challenges, lessons, and seeing God’s goodness and faithfulness in ways I didn’t expect. Last February I was diagnosed with a rare knee condition, and navigating that season wasn’t easy. There were a lot of unknowns and moments where I really had to lean on prayer. But looking back now, I can clearly see how God carried me through it.

Through this whole journey, I truly believe prayers have been moving mountains and that God has aligned the right people to guide me while I was navigating this disease.

Huge thanks to @sydstern and the @tgctsupport for the invaluable insights and community that calmed my fears. I’m also so grateful for @meeee_linh , who advocated for me and connected me with an amazing doctor. That “God moment” visit led to the right treatment, and I’ve been pain-free ever since!

I also have to give a huge shout-out to my amazing chiropractor @dr.amandachiro ! I am so incredibly grateful to have met her. Beyond just the physical adjustments, she gave me a much-needed break from life—a space where I could finally just rest and reset. She’s been such a vital part of my healing process, and I truly believe she’s one of the main reasons I’m feeling so much better today. The way she listens to what my body needs and helps me get back into alignment has been a total game changer. I’m so thankful for her heart and her expertise.

To my amazing family—thank you for your endless patience and for carrying me through the times I was incapacitated. I am so blessed by my husband and kids!

To my @otzchurch family, Pastor Nandy, and Ate Everlyn—thank you for the prayers I truly felt. You didn’t just say you were praying; you stood in faith with me. Like the friends who carried the man to Jesus for healing, you’ve shown me that a godly circle is a true gift.

I kept my birthday simple this year. I gave myself permission to do absolutely nothing… slept half the day, picked up the kids, and then we drove to OC for dinner with family. It was perfect.

Another year older, another year more grateful. God has truly been so good to me. ❤️❤️❤️

#thankful #grateful #blessed #thankyoujesus

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