The mission of TGCT Support is to improve the treatment and quality of life of #TGCT patients through #research #advocacy #compassion & #education |👇🏻
Joined November 2021
- Tweets 636
- Following 346
- Followers 490
- Likes 928
288 Photos and videos
1
3
10
406
TGCT Support retweeted
May 13
📢 In this interview, Dr Stern (Head of @TGCTSupportorg Programs) discusses how advances in CSF1-targeted therapies are reshaping the treatment landscape, alongside the continued importance of multidisciplinary care and earlier specialist referral.
Read: touchoncology.com/insight/sp…
2
4
226
Apr 20
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 an orthopedic conference and we are honored to amplify the pts voice in research 🔬
Stay tuned!
1
4
82
We are 1 MONTH away from our #TGCT Day of Learning (TDOL) conference at LUMC in 🇳🇱 (May 08)! Our agenda is jam packed with talks from experts and moments to connect with pts living with TGCT.
registered to attend the free day event, go to👇👇👇
eventbrite.com/e/tgct-day-of…
1
2
187
TGCT Support retweeted
Apr 3
Good work @stern_sydney Need to spread the word @SarcomaEast @BritOrthoOnc @EastleyNick @MrJDStevenson
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/…
Patient: tgctsupport.org/uploads/1/3/…
3
5
287
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/…
Patient: tgctsupport.org/uploads/1/3/…
5
10
1,257
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=Nkc6…
155
TGCT Support retweeted
🤩 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-salud/s…
2
4
25
982
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/3myeZL…
podcasts.apple.com/us/podcas…
1
2
92
Feb 17
France 🇫🇷 becomes second European country to get approval/access to ROMVIMZA 👏🏻👏🏻 exciting news for our European patients!
has-sante.fr/jcms/p_3860627/…
1
2
75
Feb 17
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-gu…
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/jaren-jack…
1
3
162
Feb 17
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/3myeZL…
And Apple Podcast:
podcasts.apple.com/us/podcas…
2
75
Feb 13
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/202… #RareDisease
67
