Top Tweets for #TGCTstrong
Patients shared their stories & we shared how we address gaps in cares for patients in the U.S. & globally. It’s inspiring to see that we have more similarities than differences.
We are grateful to CORD and EMD Serono for making this event happen.
Exciting week ahead for us! We are honored to represent the #TGCT community at the first-ever patient conference in China, hosted by the Chinese Organization for Rare Disorders & supported by EMD Serono.
Everyone deserves the best care without borders #AccessForAll #TGCTStrong
💪🏻 Anne, a patient diagnosed with “giant cell tumor” and unfortunately treated as giant cell tumor of the bone when she had #TGCT, exemplifies the power of self-advocacy and raising awareness for these distinct diseases. Her story is powerful!
#AnneStrong #TGCTStrong
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:
https://t.co/0eLpkYYoSF
It is our global mission to ensure patients have access to up-to-date information & care w/o geographical barriers. We are honored to attend the 1st TGCT patient conference August 24 in China with Chinese Organization of Rare Diseases and EMD Serono.
#TGCTStrong #AccessForAll
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
Last year, we submitted one abstract to #CTOS2024 and presented our #TGCT registry for the very first time. For #CTOS2025, we have submitted 2️⃣ abstracts and are hoping for the same success! 💪🏻
We thank our collaborators and their dedication to our community!
#TgctStrong
Patients with #TGCT often experience a long delay in diagnosis & misdiagnoses. Some of the most common misdiagnoses are sports injuries, baker’s cysts, bursitis, synovial chondromatosis, synovial sarcoma and more.
#TGCTstrong #TGCTWarrior
Happy #RareDiseaseDay! Did you know that TGCT is a rare disease that impacts nearly 50 per 100,000 people globally and there is 43 people per million diagnosed each year? We are one of the> 7000 rare diseases.
#TGCTStrong #TGCT #PVNS #ShowYourStripes #LightUpForRare
The management of #TGCT can be complex and involve many different types of healthcare providers. Learn more about treatments for TGCT at https://t.co/TY3w7pMMNa
#showyourstripes #rarediseaseday #tgctstrong
👀 look what’s happening in March! @richardriedelmd and @WTapMD will be discussing the decision-making considerations for navigating two approved drugs in the US and various clinical trials.
Register at https://t.co/N1ggG2cX27
#TGCTStrong #TGCT
TGCT is a rare disease and often, it’s misdiagnosed. These three facts can help explain TGCT to friends, families, & HCPs.
If you had to come up with a 4th fact, what do you think is important for everyone to know about having TGCT?
#TGCTStrong
#RareDiseaseDay #ShowYourStripes
#TGCT can occur in any joint in the body. There are 2 subtypes of TGCT that have unique considerations. Regardless of the type of TGCT, patients may report pain, swelling, & limited range in motion. https://t.co/JMTmeUjcu9 #TGCTStrong #RareDiseaseDay #ShowYourStripes
PDUFA date set for February 17, 2024. A gift for #RareDiseaseDay and #RareDiseaseMonth 😏 #TGCTStrong
Today Deciphera, a member of ONO Pharma, announced that the U.S. Food and Drug Administration (@US_FDA) has accepted the New Drug Application (NDA) for vimseltinib for priority review. Read more: https://t.co/45TwqfgATp
We are #TGCTStrong for #sarcomaawarenessmonth🎗
Add your experiences in the comments and be featured this week 😊 help raise awareness for what it’s like to have TGCT
July is #SarcomaAwarenessMonth! #TGCT is a locally aggressive tumor that is in a similar family of diseases as sarcoma. TGCT should also be treated by sarcoma specialists who are used to treating difficult tumors! Help us raise awareness this month using #TGCTStrong 😊
My TGCT journey in a nutshell that started 31st October 2023. There is plenty of support out there and if anyone needs any help, please reach out! #TGCTStrong #RareDisease
Special thanks goes out to
my mentor @stern_sydney
It’s the eve of #RareDiseaseDay and boy, do we have some resources for you! Have you seen our FAQs? These are one-sheeters to answer all your questions about #TGCT/#PVNS
Today we will be highlighting some of our most useful resources! Stay tuned.
#tgctstrong
#TGCT is often misdiagnosed due to its nonspecific symptoms (e.g., pain, swelling, limited range of motion, stiffness).
Tell us what you or your provider thought you had before you were diagnosed with TGCT?
#RareDiseaseDay2024 #tgctstrong #pvns
Not a lot of people know this, but I have a diffuse tenosynovial giant cell tumour in my left ankle. I've had 3 operations on my ankle so far. Every year I have an MRI to check progression. More surgery in the future. #TGCTStrong
We are 1 week away from #RareDiseaseDay! We will be spotlighting different aspects of the disease this week to raise awareness. Share these posts with the #TGCTStrong hashtag and we will light up the week 💪🏻
According to 2017 Danish and Dutch studies,
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