Last chance to register for the 2026 SPAGN Annual Conference! Come join us in Stockholm, May 1-3. Go to bit.ly/SPAGN26 to get started!

Sarcomas are rare, but the need for answers is not. This Rare Disease Day, we raise our voices for faster diagnosis, stronger research, and a future with better outcomes for all rare cancer patients.

Whole genome sequencing is improving outcomes for sarcoma patients in Sweden. More accurate diagnoses, better treatment choices, and access to targeted therapies are already making a difference. Read more: www.sarcoma-patients.org/blog/wgs-swe... #Sarcoma #RareCancer

Doctors, patients & advocates are always searching for less invasive ways to treat sarcoma w/o surgery. In this edition of “Roger Explores… Ultrasound,” Roger Wilson looks at High Intensity Focused Ultrasound (HIFU) and its use for sarcomas. Read more: bit.ly/RogerExplores_US

World Cancer Day reminds us that cancer is not one disease and not one experience. Sarcomas encompass well over 100 rare and complex subtypes of soft tissue and bone cancer. Though they represent about 1% of adult cancers, they make up 15–20% of childhood and adolescent cancers. 1/3

Merry Christmas to our global sarcoma community. Thank you for your continued collaboration and partnership to change the world for sarcoma patients!

Your team at SPAGN will be taking a short break from December 22 through January 6. We will be back in the new year and look forward to continuing our work together.

Our final SPAGN blog of 2025, written by Executive Director Kathrin Schuster, reflects on a year of patient-driven advocacy and global collaboration. Read more: bit.ly/SPAGNblog2025 #Sarcoma #PatientAdvocacy

Our newest blog highlights the great work at @bcrt-uk.bsky.social and the multiple awards they received at the SPAGN Annual Conference this year. Read more & Share: www.sarcoma-patients.org/blog/bcrt_aw... #SarcomaAwareness

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: www.sarcoma-patients.org/blog/drug_re... #Sarcoma #RareCancers #DrugRepurposing

Get ready for SPAGN 2026! Details coming soon.

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: www.sarcoma-patients.org/blog/drug_re... #Sarcoma #RareCancers #PatientAdvocacy #DrugRepurposing

Did you catch our latest blog? Natalia Fernández Diaz-Cabal writes about the Dutch Phyllodes Patient Group, honored for their work promoting patient treatment guidelines at the SPAGN Annual Conference in Washington D.C., April 2025. Read more: www.sarcoma-patients.org/blog/what_ab...

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: www.sarcoma-patients.org/blog/what_ab... #Sarcoma #PhyllodesTumor #RareCancers

Our official statement on the discontinued development of brigimadlin, from the SPAGN Board of Directors, Executive Director, and Team.

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: bit.ly/SPAGNblog_Sh... #BoneSarcomaAwareness #ChildhoodCancer #Sarcoma #PatientAdvocacy

As we close out #BoneCancerAwarenessWeek, #SPAGN is proud to stand alongside @bcrt-uk.bsky.social 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: www.bcrt.org.uk/awareness/bo...

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: www.sarcoma-patients.org/blog/foundin... #BoneSarcomaAwareness #Sarcoma

🚀 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: bit.ly/VimseltinibN... #TGCT #Sarcoma

Did you miss our latest blog? Sorrel Bickley, board member for #SPAGN and Director of Research, Policy, and Support for @sarcoma.org.uk writes about the incredible investments that Sarcoma UK is making in patient-centered research for sarcomas.

Check out our NEWEST BLOG featuring #SPAGN board member & Dir. of Research, Policy & Support for @sarcoma.org.uk, Dr. Sorrel Bickley. Sorrel talks about losing her mum to sarcoma + her mission to center patients' voices in sarcoma research. Read more at:

SPAGN stands with our friends at Desmoid Tumor Research Foundation for #DesmoidTumorAwarenessMonth. Desmoid tumors are rare, non-metastatic soft tissue tumors that can be locally aggressive and disabling. Learn more: bit.ly/Desmoid2025 #RareDisease #SarcomaAwareness

From our new series by Roger Wilson ( @amocras.bsky.social ) : 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: www.sarcoma-patients.org/blog/roger-e... #Sarcoma

#SarcomaAwarenessMonth ends today. Thank you to all who participated in this year's #KnowYourNormal campaign! Making videos, sharing graphics, telling your story, and sharing your knowledge brings our global sarcoma community together. We look forward to planning for next year! - The team at SPAGN

In our final video from the #KnowYourNormal series: Maggie Cameron of The EHE Foundation tells her story of how her sarcoma diagnosis was discovered while undergoing routine scans for a different medical condition! #SarcomaSignsAndSymptoms #SarcomaAwarenessMonth

Janet's daughter was 12 years old and she noticed her limping. They thought she simply tripped over a root. But when home remedies didn't reduce the swelling, they sought further answers. This is their story.

We are stronger together. SPAGN is a network of nearly 70 national patient advocacy groups specializing in different subtypes of sarcomas. Do you represent a sarcoma advocacy group? Visit bit.ly/SPAGNmembers to learn more about membership. #SarcomaAwarenessMonth2025

Namuwonge's first symptom was an unexplained swelling on her right leg. She had never heard of sarcoma before her diagnosis. Hear her story and follow the Uganda Alliance of Patients’ Organizations(UAPO) for more! #KnowYourNormal #SarcomaSignsAndSymptoms #SarcomaAwarenessMonth

Kamil of the Polish Sarcoma and Melanoma Patients Association was lucky. His doctor immediately recognized the warning signs in his x-ray, and referred him to an oncologist straight away. He was diagnosed with sarcoma 2 weeks later. #KnowYourNormal #SarcomaSignsAndSymptoms #SarcomaAwarenessMonth

Angelika Sandakly of INFO SARCOMES shares the story of her son's first symptom that led to his sarcoma diagnosis. hashtag#KnowYourNormal hashtag#SarcomaSignsAndSymptoms hashtag#SarcomaAwarenessMonth

Sarcomas can be isolating, but you are not alone. Three tips: 1️⃣ Find a patient support group near you at bit.ly/SPAGNmembers 2️⃣ Join patient support groups on social media 3️⃣ Share your story, what questions to ask, and what worked for you. #SarcomaAwarenessMonth2025

Rare, but never alone. Tonight, we light up the world for sarcoma. #SarcomaAwarenessMonth

Our friends at @curesarcoma.bsky.social have coordinated the #LightUpForSarcoma campaign for years. Now, it's going global. Join our members & post a photo of local landmarks and homes lit up with yellow to bring awareness to these rare cancers. You are not alone. #SarcomaAwarenessMonth2025

Look back on your sarcoma journey and think of the people who never let you walk alone. Tag them and share one thing they did that carried you through. SPAGN’s member groups across the globe create a support network for thousands.💛 #SarcomaAwarenessMonth2025 #RareButNotAlone

Annie of the National Leiomyosarcoma Foundation (NLMSF) shares her experience as a caregiver to an LMS patient, her husband, Dr. Mitch Achee. #KnowYourNormal #SarcomaAwarenessMonth2025

Marloes found a lump in her breast and expected breast cancer. A quick referral and specialized testing identified that she was in fact a Phyllodes sarcoma patient. Hear her story. #KnowYourNormal #SarcomaAwarenessMonth2025

Brazil still faces serious challenges in sarcoma care. But global collaboration is helping close the gap. For patients and families, it’s also a reminder: Sarcoma may be rare, but you are not alone. Our latest blog: bit.ly/SPAGNblog_Br... #SarcomaAwarenessMonth #KnowYourNormal

We asked #sarcoma patients worldwide what first tipped them off, and two answers stood out: PAIN, and an unexplained, fast-growing lump or swelling. Don't downplay the discomfort. Listen to your body and #KnowYourNormal.

Sandeep is a Ewing Sarcoma patient whose first symptoms appeared at age 12. It took him 3 years and multiple physicians to get a correct diagnosis. Today he has transformed sarcoma diagnosis and care for rural patients in India. Learn more at: digiswasthya.org #KnowYourNormal #SarcomaAwarenessMonth

As a teenager, Kurt noticed a painful lump on his leg during football practice. His mom made him get it checked out. Soon after he was diagnosed with osteosarcoma. That began his journey to becoming a sarcoma surgeon and scientist decades later. Hear his story. #SarcomaAwarenessMonth

HEALTH CARE PROVIDERS: Don’t dismiss it. Learn the red flags for potential sarcoma & help your patients get clear answers, quickly. Primary care is often the only window to intercept sarcoma early. Commit to “no non‑answers.” #SarcomaAwarenessMonth2025 #SarcomaSignsAndSymptoms

Our friends at @curesarcoma.bsky.social started this tradition years ago. Now it's global! On 7/25 we’ll “Light Up the World for Sarcoma.” Ask your local landmarks to light up the night w/yellow to bring awareness for sarcoma, or shine a light in your own home and post a pic. #SarcomaAwarenessMonth

Over half of sarcoma patients consult ≥ 3 physicians before diagnosis, and only 7.7 % of GPs suspect sarcoma at the first visit. Primary health providers are encouraged to learn sarcoma warning signs to improve early detection. Commit to “No Non‑Answers.” #SarcomaAwarenessMonth

Leg pain. Misdiagnoses. A journey of over 1,500 km. A rural sarcoma survivor in India turned his 3-year search for a diagnosis into a mission to change the system. Read his story: bit.ly/SPAGNblog_DF #SarcomaAwarenessMonth #KnowYourNormal #BreakingBarriers #SPAGN

Wilker is an #LMS patient from Brazil, an oncology pharmacist and an advocate w/Sarcomunicandonos America Latina. Today he shares the story of his journey to his diagnosis and the emotional toll that led him into patient advocacy. #SarcomaAwarenessMonth2025 #KnowYourNormal #LMSawarenessday

LMS begins in smooth-muscle tissue, often in the uterus, abdomen, or limbs. Common symptoms include vague pain/fullness, a lump, heavy menstrual flow or other bleeding. #KnowYourNormal: If something feels off, ask for imaging + a referral to a sarcoma specialist. #LMSAwarenessDay

How many chances do we get to recognize a sarcoma early? SPAGN’s research found that over half of patients visit 3 or more doctors before their sarcoma is detected, leading to delays that can significantly impact the chance of successful treatment. #SarcomaAwarenessMonth 1/4

Christina's son Dylan told her his shoulder hurt after falling down at school. They went straight to the ER for an evaluation. That evening, she got a really unusual call from the doctor. Hear her story. #SarcomaAwarenessMonth2025 #KnowYourNormal #osteosarcoma

Tasha of @curesarcoma.bsky.social had a sore throat that refused to go away. They ruled out COVID and strep before a lump began to grow. Guess how many doctors she had to see before she got a diagnosis? Watch and find out. #SarcomaAwarenessMonth2025 #KnowYourNormal #rhabdomyosarcoma

Gastrointestinal Stromal Tumors can present as ulcers or reflux. Look for unexplained GI bleeding, fatigue, persistent fullness, or abdominal pain. If GIST is suspected, ask about mutation profiling. Share your GIST story below.👇 #SarcomaAwarenessMonth2025 #GISTAwarenessDay