Sarcoma Patient Advocacy Global Network (SPAGN)
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sarcomapatients.bsky.social
Sarcoma Patient Advocacy Global Network (SPAGN)
@sarcomapatients.bsky.social
16 followers 15 following 69 posts
A global network of Sarcoma patient advocacy groups, working together, making a difference! Learn more at www.sarcoma-patients.org.
Posts Replies Media Videos
sarcomapatients.bsky.social
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
Bright yellow graphic with large blue quotation mark. Text reads: “Drug repurposing can play an important role in ensuring faster and affordable access to new treatments and innovation in any type of disease. It can have a crucial role in all rare cancers, such as sarcomas, and in particular for paediatric patients or adolescent and young adults (AYA) where sarcomas are more common.” — Ornella Gonzato & Roger Wilson. Bottom corner includes the text “Read more” and link bit.ly/SPAGNblog_DrugRepurpose.
November 10, 2025 at 9:01 AM
sarcomapatients.bsky.social
Get ready for SPAGN 2026! Details coming soon.
November 9, 2025 at 5:30 PM
sarcomapatients.bsky.social
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...
A graphic promoting a new blog from SPAGN featuring the following quote set against a black and white photo of an empty road: "The path of rarity cannot be travelled alone."
October 31, 2025 at 9:02 AM
sarcomapatients.bsky.social
Our official statement on the discontinued development of brigimadlin, from the SPAGN Board of Directors, Executive Director, and Team.
October 24, 2025 at 8:00 AM
sarcomapatients.bsky.social
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
A graphic promoting the newest blog from SPAGN with a quote that reads: "Sarcoma knows no borders. Progress in research and care depends on global cooperation." Included is a photo of young Shane in a basketball jersey set against the background of a world globe in yellow. The caption reads: "Read more" and points to a bitly link for the blog. The SPAGN and Shane Osteosarcoma Association logos are at the bottom.
October 10, 2025 at 8:01 AM
sarcomapatients.bsky.social
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...
A graphic describing the symptoms of bone cancer which include: Painkillers may not help (and pain can become worse at night) Tenderness of the area Bone pain (which can be constant or may come and go) Problems with Mobility (such as still joints or restricted movement) Bruising easily A lump or swelling (may be seen or felt) An unexplained limp A bone fracture Tiredness, Fever, Weight Loss or Muscle Tone may also be experienced The caption at the top reads "Could it be bone cancer?" and the bottom has the Hashtag Bone Cancer Awareness Week.
October 10, 2025 at 6:00 AM
sarcomapatients.bsky.social
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.
A graphic featuring a quote from the latest SPAGN blog that reads: "I hear so often from people who feel that research gives them hope. They want to see a future where sarcoma might have a less devastating effect on people -- diagnosis could be faster, treatments could be more effective, and they could bring fewer harmful side effects.
September 15, 2025 at 12:02 PM
sarcomapatients.bsky.social
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
A graphic featuring an image of a Desmoid Tumor shown in blue set against a light blue background with the caption: "Desmoid Tumor Awareness Month". At the bottom is the logo for Desmoid Tumor Research Foundation and a short link to their awareness website toolkit, bit.ly/Desmoid2025. The lower left corner is curled up to reveal the SPAGN logo.
September 1, 2025 at 8:00 AM
sarcomapatients.bsky.social
#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
A collage of 9 photos of members of the SPAGN board and team wearing yellow for sarcoma. In the center is a blue square that says "Thank you!" The caption at the bottom says "Sarcoma Awareness Month 2025" with the SPAGN logo.
July 31, 2025 at 8:00 AM
sarcomapatients.bsky.social
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
July 30, 2025 at 10:01 AM
sarcomapatients.bsky.social
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.
July 29, 2025 at 2:04 PM
sarcomapatients.bsky.social
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
A graphic featuring a blue watercolor background with the white relief of a world map overlaying it, surrounded on the top and bottom by the logos of the SPAGN member groups. The caption reads: "Nearly 70 member groups. Learn more and join our global community."
July 29, 2025 at 11:01 AM
sarcomapatients.bsky.social
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
July 29, 2025 at 8:02 AM
sarcomapatients.bsky.social
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
July 28, 2025 at 11:36 AM
sarcomapatients.bsky.social
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
July 28, 2025 at 11:24 AM
sarcomapatients.bsky.social
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
A graphic featuring a photo of two people walking together, washed in blue, with an outline of a globe framing their bodies and the SPAGN logo in the center. The caption reads: "We are rare, but not alone".
July 26, 2025 at 9:00 AM
sarcomapatients.bsky.social
Rare, but never alone. Tonight, we light up the world for sarcoma.

#SarcomaAwarenessMonth
July 25, 2025 at 12:02 PM
sarcomapatients.bsky.social
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
A graphic featuring a collage of photos of monuments and homes lit up with yellow lights. The caption reads: "Light up for sarcoma. TONIGHT, post your photos of local landmarks, homes, and spaces lit up with yellow lights to show everyone struggling with sarcoma you are not alone."
July 25, 2025 at 8:00 AM
sarcomapatients.bsky.social
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
A graphic featuring a black and white photo of a group of women walking through the woods with their arms around each other supportively. The caption reads: "Sarcoma can be a lonely road. Tag someone who walked with you."
July 24, 2025 at 8:00 AM
sarcomapatients.bsky.social
Annie of the National Leiomyosarcoma Foundation (NLMSF) shares her experience as a caregiver to an LMS patient, her husband, Dr. Mitch Achee.

#KnowYourNormal #SarcomaAwarenessMonth2025
July 23, 2025 at 2:02 PM
sarcomapatients.bsky.social
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
July 23, 2025 at 10:01 AM
sarcomapatients.bsky.social
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.
A graphic featuring a word cloud with common symptoms of sarcoma. The largest words are: PAIN, Fatigue, Lump or swelling, followed by Loss of mobility, Weight loss, Bladder or bowel problems, then Nausea, Fever, Paralysis / numbness, Headaches, problems with vision, fracture. The caption reads: "Most common initial symptoms reported by sarcoma patients are pain and/or unexplained lump or swelling. The data comes from the Global Sarcoma Diagnosis Pathway Survey."
July 22, 2025 at 9:01 AM
sarcomapatients.bsky.social
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
July 21, 2025 at 3:36 PM
sarcomapatients.bsky.social
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
July 21, 2025 at 8:01 AM
sarcomapatients.bsky.social
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
A graphic for Sarcoma Awareness Month 2025 featuring a row of red flags set against a gray sky. The caption reads: "Sarcoma Red Flags. Any lump 1-2 in (about 5cm) or more, even if painless, situated in the muscle or soft tissue. Any palpable bone lesion. Unexplained pain especially at night, if lasting more than a month. Learn the signs, insist on answers."
July 19, 2025 at 9:00 AM