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This July, SPAGN and our global member organizations invite you to be part of an international campaign focused on recognizing the signs of sarcoma — and taking action.

Sarcomas are rare cancers with symptoms that often go unnoticed: a lump, swelling, persistent pain, or loss of mobility. These signs are frequently misread or dismissed, which can lead to delays in receiving the right care.

This year’s focus is on helping people notice what’s not normaltrust their instincts, and speak up — while encouraging healthcare providers to listen, refer, and investigate when something doesn’t add up.

From patients and caregivers to clinicians and advocates, every voice counts in the effort to make sarcomas visible and recognized.

Welcome to the Sarcoma Patient Advocacy Global Network!

Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of national Sarcoma Patient Advocacy Organizations. Today, more than 60 member groups from 5 continents gather under the umbrella of SPAGN, providing a common, international and influential patient voice for sarcoma patients around the globe. SPAGN is working to improve the treatment and care of sarcoma patients through information and support, and by increasing the visibility of sarcoma with policymakers and the public.

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May 16 2025

Board Elections 2025

SPAGN Board Elections: With gratitude and excitement for what’s ahead We are delighted to announce the re-election of Vandana Gupta and Sorrel Bickley to the SPAGN Board for another four-year term. Their continued commitment, expertise, and leadership are invaluable to our work in strengthening the global sarcoma patient advocacy community. We also warmly congratulate Denise…
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Apr 24 2025

2025 Lifetime Achievement Awards – Honoring Outstanding Contributions

🏅 2025 Lifetime Achievement Awards – Honoring Outstanding Contributions SPAGN is proud to announce the recipients of the 2025 Lifetime Achievement Awards given during the SPAGN Annual Conference 2025, recognizing their exceptional dedication and lasting impact on the sarcoma community through advocacy, research, and support. This year’s honorees have each played a key role in…
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Apr 15 2025

Advocacy in Action Award & The “Paola Gonzato Memory Award” 2025

🏆 2025 Advocacy in Action Awards – Recognizing Excellence in Sarcoma Advocacy Projects SPAGN is proud to announce the recipients of the 2025 Advocacy in Action Awards, presented during the SPAGN Annual Conference 2025. These awards celebrate innovative and impactful advocacy projects that have made a significant difference in the sarcoma community. This year’s winning…
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Jul 23 2025

A view from Brazil: Being part of international networks helps improve sarcoma care

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 raise awareness, but also to bring us closer together. A reminder of our collective commitment.
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Jul 16 2025

Breaking Barriers: A rural sarcoma survivor’s mission to overcome disparities in India 

July is Sarcoma Awareness Month – a time to not only spotlight a rare and often misunderstood form of cancer but also to amplify stories of resilience, hope and innovation. San¬¬deep Kumar tells his personal story as a bone sarcoma survivor from rural India that has turned into a story of breaking barriers for others. Knowing firsthand what it means to battle cancer in a small town, he endeavored to mobilize technology and experts to bridge the gap between rural patients and quality healthcare.
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Jun 23 2025

How to improve quality of life during and after radiotherapy? Sarcoma practice and research in large university clinics in Toronto and Berlin

The winner of this year’s research grant of the German Sarcoma Foundation, Dr. Siyer Roohani, decided to go to Canada to deepen his sarcoma expertise. A soon-to-be radiation oncology specialist for sarcoma in Germany, he currently works and researches as a clinical scholar at one of the largest sarcoma centres in the world, the Princess Margaret Cancer Centre in Toronto, Canada. In a chat with Voices of Sarcoma, he explains why he totally encourages any young scientist to do a work stay abroad, especially those wanting to specialize in sarcoma.
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Working together, making a difference.

SPAGN and Members

The network only is as strong as its members. SPAGN welcomes every sarcoma, GIST or desmoid patient group and individuals interested in sarcomas worldwide to become part of our network and thus strengthen it.

Events and Projects

SPAGN not only hosts a variety of events, but also participates in congresses and external events. It is our aim to represent the patients' voice wherever suitable, necessary and potentially helpful to achieve our goals, foremost to improve the situation of sarcoma patients around the globe. Find out more in our section "Events & Projects"

Experts & Research

Sarcomas are rare. It is therefore very important to find physicians or even better multidisciplinary teams who have experience with this disease. SPAGN is setting up alist of sarcoma centers or centers with sarcoma expertise per country. Find out more here.

Sarcoma Facts & Figures

Sarcomas are a diverse and relatively rare group of malignant tumors. The vast majority of diagnosed sarcomas are soft tissue sarcomas, while malignant bone tumors make up just over 10%.

Find out more about Soft Tissue Sarcomas, Bone Sarcomas, GIST and Desmoid Tumors in our section "Sarcoma Facts & Figures"

Blog, News and Newsletter

Please visit our News section or our SPAGN Blog "Voices of Sarcoma". To get regular information, please sign up for our Newsletter today!