SPAGN
@sarcomapatients
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Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of Sarcoma, GIST and Desmoid Patient Advocacy Groups
Global Network
Joined September 2011
New from SPAGN: Roger Explores natural therapies. What to trust, what to skip, how to spot red flags, and why some proven cancer drugs started in nature. Read: https://t.co/6nIjh97Bbe
#Sarcoma
sarcoma-patients.org
As patient advocates, we do not promote non-standard therapies, yet in practice you probably have encountered cases of cancer patients or their family turning to so-called ‘alternative’ natural...
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Repurposing existing drugs could open new treatment paths for rare cancers like sarcoma. Learn why SPAGN's Ornella Gonzato and Roger Wilson believe this is an urgent opportunity for our community. Read the blog: https://t.co/kA7DFrxLsM
#Sarcoma #RareCancers #DrugRepurposing
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New uses for existing drugs offer a faster, smarter way to advance sarcoma treatments. At SPAGN we’re backing reform and non-profit innovation so patients benefit. Our latest blog: https://t.co/kA7DFrxLsM
#Sarcoma #RareCancers #PatientAdvocacy #DrugRepurposing
sarcoma-patients.org
An ongoing review of pharmaceutical regulations at the European Union’s level has the potential to unleash therapeutic innovations through drug repurposing. If approved, drug development could be...
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Did you catch our latest blog? Natalia Fernández Diaz-Cabal writes about the Dutch Phyllodes Patient Group @PPSarcomen, honored for their work promoting patient treatment guidelines at the SPAGN Annual Conference in Washington D.C., April 2025. Read more: https://t.co/Dx1gZLzDwV
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Meet Dutch patient-advocate Marloes van Esterik. Her journey with a borderline phyllodes breast tumour sparked the creation of a national patient group and a push for formal protocols. More in SPAGN's latest blog: https://t.co/Dx1gZLAbmt
#Sarcoma #PhyllodesTumor #RareCancers
sarcoma-patients.org
This year, SPAGN awarded the third prize of Advocacy in Action Award to the Patiënten Platform Sarcomen in the Netherlands for their project on the management of phyllodes tumors, a rare form of...
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Our official statement on the discontinued development of brigimadlin, from the SPAGN Board of Directors, Executive Director, and Team.
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Did you miss our newest blog? Read Cédric Bochsler's moving story of his son Shane's surprising diagnosis, and how they've turned their grief into action. Read and share: https://t.co/Bk5596yWxe
#BoneSarcomaAwareness #ChildhoodCancer #Sarcoma #PatientAdvocacy
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As we close out #BoneCancerAwarenessWeek, #SPAGN is proud to stand alongside @BCRT to shine a light on bone cancer. We're raising awareness of the signs and symptoms through this year’s #CouldItBeBoneCancer campaign. Learn more and get involved at: https://t.co/ysfmzVKoWF
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#BoneCancerAwarenessWeek is here! This October, we're calling for urgent change to help save lives. Please share this post to raise life-changing awareness 🧡 Learn more: https://t.co/uKXTl7MTKM
#CouldItBeBoneCancer #Awareness #UntilTheresACure
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Our latest #MemberBlog from #SPAGN member, Cédric Bochsler of the Shane Osteosarcoma Association, writes about his family's journey and their work to honor their son Shane across the global sarcoma community. Read + share: https://t.co/jTNXkeKE0D
#BoneSarcomaAwareness #Sarcoma
sarcoma-patients.org
When their eight-year-old son Shane passed away from osteosarcoma, Cédric Bochsler and his wife Sarah Jane chose to honour his memory by founding an association dedicated to raising awareness,...
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🚀 Big step forward for TGCT: EMA has accepted the marketing authorization application for vimseltinib, potentially making it the first approved treatment in Europe for symptomatic TGCT when surgery isn’t viable. Read more at: https://t.co/EDaNsMI64v
#TGCT #Sarcoma
sarcoma-patients.org
September 2025 – The European Commission approved vimseltinib for the treatment of adults with symptomatic tenosynovial giant cell tumor (TGCT) not qualifying for surgery and with clinically relevant...
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@Sarcoma_UK Read the full blog and share here: https://t.co/YiWe06cJMN Thank you @Sarcoma_UK and Sorrel!
sarcoma-patients.org
Advances in understanding sarcoma can change the lives of patients – particularly, if the research is result of the efforts and energy of people affected by sarcoma themselves. For Dr. Sorrel...
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Did you miss our latest blog? Sorrel Bickley, board member for #SPAGN and Director of Research, Policy, and Support for @sarcoma_uk writes about the incredible investments that Sarcoma UK is making in patient-centered research for #sarcomas. #PatientAdvocacy #CancerResearch
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Check out our NEWEST BLOG featuring #SPAGN board member & Dir. of Research, Policy & Support for @Sarcoma_UK, Dr. Sorrel Bickley. Sorrel talks about losing her mum to sarcoma and her mission to center patients' voices in sarcoma research. Read more at:
sarcoma-patients.org
Advances in understanding sarcoma can change the lives of patients – particularly, if the research is result of the efforts and energy of people affected by sarcoma themselves. For Dr. Sorrel...
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September is desmoid awareness month. #Desmoid #awareness Fact 1- Patient education Desmoid tumors are rare tumors They are not cancers. #desmoidawarenessmonth
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SPAGN stands with @DTRFoundation for #DesmoidTumorAwarenessMonth. Desmoid tumors are rare, non-metastatic soft tissue tumors that can be locally aggressive and disabling. Learn more: https://t.co/J6uZ7i5e3o
#RareDisease #SarcomaAwareness
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Today marks the end of #SarcomaAwarenessMonth. Thank you to everyone who participated in this year's #KnowYourNormal campaign! We look forward to sharing insights, welcoming new members, and diving into planning for next year right away. - The entire team at SPAGN
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In our final video from the #KnowYourNormal series: Maggie Cameron of @EHEfoundation tells her story of how her sarcoma diagnosis was discovered while undergoing routine scans for a different medical condition! #SarcomaSignsAndSymptoms
#SarcomaAwarenessMonth
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People living with #EHE are vital to EHE research. If you are planning a surgery or transplant, consider donating your tumor tissue to the EHE Biobank. 📩 To learn more, email biobank@fightehe.org #EHEbiobank #epithelioidhemangioendothelioma #sarcoma #patientpoweredresearch
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