Sarcoma Patient Advocacy Global Network - SPAGN

11/09/2025

Check out our NEWEST BLOG featuring board member and Director of Research, Policy and Support for Sarcoma UK, Dr. Sorrel Bickley. Sorrel talks about her experience of losing her mum to sarcoma and her mission to bring forth the patient's voice in sarcoma research.

Read more at: https://www.sarcoma-patients.org/blog/research_agenda_driven_by_patients/

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 Bickley, the Director of Research, Policy and Support of Sarcoma UK, it is crucial to focus on the researc...

01/09/2025

September is Desmoid Tumor Awareness Month! This month we stand with The Desmoid Tumor Research Foundation- DTRF, a member of the , to shine a light on desmoid tumors.

Desmoids (aggressive fibromatosis) are rare, non-metastatic soft tissue tumors that grow from connective tissue. They do not spread to distant organs, but they can be locally aggressive, causing pain, functional impairment, and serious complications depending on location.

Learn more, find resources for patients and caregivers, and help raise awareness with DTRF’s toolkit: https://dtrf.org/patients-caregivers/desmoid-tumor-awareness-month/?blm_aid=37898

19/08/2025

The latest in our new series: Roger Explores...Natural therapies

If “natural” keeps popping up in your feed, this one’s for you. Inside the new SPAGN post, Roger Wilson breaks down:

✅ How to tell complementary care from an “alternative” claim

⚠️ Red flags that signal hype, harm, or wasted money

🔬 What the evidence says about popular internet cures people ask about

🪴 Why many real cancer drugs began in nature and what makes them trustworthy

Read the full piece:
https://www.sarcoma-patients.org/blog/roger-explores-natural-therapies/

31/07/2025

Today marks the end of . Thank you to everyone who participated in this year's campaign! Making videos, sharing graphics, telling your story, and sharing your knowledge -- all of it helps to bring our global sarcoma community together. We look forward to sharing insights, welcoming new members, and diving into planning for next year right away.

- The entire team at SPAGN

29/07/2025

We are stronger together. The Sarcoma Patient Advocacy Global Network serves as a network connecting national and regional member groups specializing in many subtypes of sarcomas. With nearly 70 member groups spanning six continents, we connect sarcoma patients and caregivers with community, support, and information to help them on their journey.

Do you represent a sarcoma advocacy group? Then join us! Visit bit.ly/SPAGNmembers to learn more.

26/07/2025

Community is a critical part of your care. Rare diseases like sarcomas can be incredibly isolating, but you do not have to go through this on your own. Here are three ways to tap into the collective strength of your global sarcoma community:
1️⃣ Find a patient support group near you via SPAGN’s directory at https://bit.ly/SPAGNmembers

2️⃣ Join patient support groups on social media to connect with patients of your subtype from around the world – also open to caregivers!

3️⃣ Share your experiences, insights from your doctor, and what worked for you so no one starts from zero.

We may be rare, but we are NOT alone. 💛

25/07/2025

Tonight our timelines will glow with hope. Light‑Up for Sarcoma has been coordinated for years by our friends at Sarcoma Foundation of America, Inc. (). This year, we’re going global, encouraging all of our member groups spanning six continents to join in. Post a photo of local landmarks and homes lit up with yellow to bring awareness to these rare cancers. This is a message to all those living with sarcoma, for those missing a loved one, and for those waiting for answers: You are not alone. 🌍

24/07/2025

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.💛

23/07/2025

In Brazil, many sarcoma patients still face long delays in diagnosis and limited access to specialized care. Especially outside major cities.

But international collaboration is helping change that.

This week for Sarcoma Awareness Month, we spotlight how global networks of sarcoma experts, patients, and caregivers work together to strengthen sarcoma care.

It's a powerful reminder to sarcoma patients and their loved ones: Even if your disease is rare, you are not alone.

Our latest blog, courtesy of Dr. Fernando Campos :
“A View from Brazil: Being part of international networks helps improve sarcoma care”
🔗 https://www.sarcoma-patients.org/blog/a_view_from_brazil/

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Global cooperation is not an abstract ideal, says Dr. Fernando Campos, medical oncologist from Brazil. He describes the positive impact of international exchange projects on the daily practice of sarcoma care in his country. This is why he hopes that the Sarcoma Awareness Month serve not only to rai...

22/07/2025

When we asked patients worldwide what first tipped them off, two answers towered above every other word on this graphic: PAIN, and an unexplained, fast-growing lump or swelling.

Too many of us chalk those signs up to a sports injury, a pulled muscle, or “just getting older.” We may downplay the discomfort because we do not want to bother anyone. Our survey results remind you to listen to your body and .

If a lump is growing, deeper than the skin, larger than a golf ball, or painless but stubborn, ask for imaging.

If bone or soft-tissue pain wakes you at night or lingers longer than a month, push for an answer.

Listening to these red flags can turn months of uncertainty into a single, decisive appointment. Share below the first symptom that made you look twice—your experience might be the nudge that saves someone else valuable time.