TGCT Support
627 posts

TGCT Support
@TGCTSupportorg
The mission of TGCT Support is to improve the treatment and quality of life of #TGCT patients through #research #advocacy #compassion & #education |👇🏻
Bergabung Kasım 2021
346 Mengikuti488 Pengikut

Check out our newest webinar on our TGCT Registry, comparing 122 pediatric patients to 497 adult patients with #TGCT 📖 recently published.
youtu.be/LK_DpJ66Fo8?si…

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🤩 Una de las mayores recompensas de ser oncólogo es realizar ciencia con un beneficio tangible en pacientes
🏥 Pimicotinib es un fármaco muy eficaz en pacientes con tumor tenosinvial de células gigantes, #TumorRaro sin fármacos aprobados en España
elmundo.es/ciencia-y-salu…
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@DrCeSarcoma Thank you for raising awareness and we hope there’s an approved therapy in Spain soon! 🙏
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We have 5 available episode of our Herding Hope: Zebra & TGCT Talk podcast 🎙️🦓! Want to hear firsthand experiences, stories, and key messages from patients with #TGCT?
Listen on Spotify or Apple Podcasts:
open.spotify.com/show/3myeZL61y…
podcasts.apple.com/us/podcast/her…
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Thanks to @assotgctfrance for their efforts and collaboration ☺️ we celebrate today 🌍
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France 🇫🇷 becomes second European country to get approval/access to ROMVIMZA 👏🏻👏🏻 exciting news for our European patients!
has-sante.fr/jcms/p_3860627…
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We are wishing @jarenjacksonjr a speedy recovery. Want to learn more? Check out the consensus on the management of #TGCT and why the naming is so important to patients!
go to TGCTSupport.org/consensus-guid…
Utah Jazz@utahjazz
Jaren Jackson Jr. underwent successful surgery to remove a localized pigmented villonodular synovitis (PVNS) growth in his left knee. Details 📰👇 #TakeNote nba.com/jazz/news/jare…
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Check out our newest podcast episode featuring Alex 🎙️ Alex shares what it’s really like living with #TGCT amid a changing treatment landscape and why expert care matters so much.
Listen now 🔗 on Spotify:
open.spotify.com/show/3myeZL61y…
And Apple Podcast:
podcasts.apple.com/us/podcast/her…

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Ultra-rare ≠ low impact. Grateful to @nationwidekids for spotlighting our pediatric #TGCT registry:
☑️ 2/3 of Peds pts wait ≥1 yr for dx
☑️ high misdiagnosis
☑️ surgery common w/ high recurrence & functional burden
☑️high unmet need
pediatricsnationwide.org/2026/02/11/reg… #RareDisease
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#funfact about #TGCT: MRI is the optimal imaging approach! TGCT is often stained with an iron storage compound called hemosiderin which has a signature appearance on MRI. X-ray often miss these soft tissue tumors.
KSL Sports@kslsports
From the @utahjazz:
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@andyblarsen #TGCT is a quality of life disease that can cause pain, swelling, and limitations in range of motion. Treatment is often symptom driven. However, it’s important the right care team sees TGCT because it has been historically under and over-treated surgically.
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I think they signaled their concern level by keeping him in the trade and even playing him in three games after discovering the PVNS
Jason Combs@JasonCombs40
@andyblarsen Is there any real concern here Andy? I know that can be pretty serious.
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@ChrisBHaynes #TGCT is a locally aggressive rare tumor that arises in the joint, tendon sheath, or bursae. It has two distinct subtypes, localized & diffuse. The outdated nomenclature may fragment care. Check out TGCTSupport.org for accurate info on the disease.
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As of 2013, the name has changed to #TGCT. This is important because it reflects a tumor disease and not a synovitis. Please let us know if we can provide any resources or a chance to raise awareness for this rare disease. @utahjazz @jarenjacksonjr
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#TGCT is a rare tumor that arises in the joint, tendon sheath, or bursae. It has two distinct subtypes, localized & diffuse. The outdated nomenclature may impact the ability to get multidisciplinary and necessary care. Check out TGCTSupport.org for info. @jarenjacksonjr
Utah Jazz@utahjazz
We announced today that Jaren Jackson Jr. will undergo surgery to remove a localized pigmented villonodular synovitis growth in his left knee. Details 📰👇 #TakeNote nba.com/jazz/news/jare…
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@utahjazz This disease is now called #TGCT, tenosynovial giant cell tumor, and not PVNS. We would love to provide any resources to him at TGCTSupport.org
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We announced today that Jaren Jackson Jr. will undergo surgery to remove a localized pigmented villonodular synovitis growth in his left knee.
Details 📰👇
#TakeNote
nba.com/jazz/news/jare…
English

@ClutchPoints @ChrisBHaynes Hey! This is called #TGCT! PVNS is an outdated name. We’d love to provide any resources at TGCTSupport.org as he starts his journey
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Jaren Jackson Jr. will undergo surgery on his left knee after a localized PVNS growth was discovered following his trade to the Jazz, per @ChrisBHaynes.
He is likely to miss the rest of the season.

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We are honored to be invited to attend the British Sarcoma Group (@BSG_Conference) annual conference at the end of February and represent the #TGCT patient community! 🇬🇧
Don’t miss the posted agenda: britishsarcomagroup.org.uk/events/event/b…

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🚨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-RegistryI…

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