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Welcome to Sarcoma Patient Global Advocacy Network!

Sarcoma Patient Global Advocacy Network (SPAGN), the international Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups, was founded in April 2009 with the aim of extending information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe and internationally. Acting in partnership with clinical experts, scientific researchers, industry and other stakeholders SPAGN is working to improve the treatment and care of sarcoma patients through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.

Oct 1 2025

European Commission approves vimseltinib for treatment of TGCT

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 deterioration of physical function. This is the 1st drug in Europe approved for treatment of TGCT, an important milestone for European patients. Based on MOTION Phase 3…
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Aug 19 2025

First Approved Treatment for Desmoid Tumors in Europe

We are pleased to share some very encouraging news for the desmoid tumor community. On August 18, 2025, the European Commission (EC) approved nirogacestat (OGSIVEO®) for adults with progressing desmoid tumors who need systemic treatment. This is the first-ever treatment officially approved in Europe for desmoid tumors – an important milestone that brings new hope…
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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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Mar 31 2025

EURACAN Launches New Website – Share Your Feedback!

🆕 EURACAN has recently launched its new website, designed to enhance accessibility and provide valuable resources for the sarcoma community. We invite you to explore the site and let us know your thoughts! 🌐 Visit the new EURACAN website HERE.  To ensure the website meets the needs of its users, EURACAN is conducting a short…
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Sep 24 2025

From grief to action: Founding the Shane Osteosarcoma Association

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, funding research and supporting families affected by this rare cancer. At the occasion of the Childhood Cancer Awareness Month, Cédric tells us how they turned their loss into advocacy for osteosarcoma research and support.
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Sep 1 2025

A research agenda driven by patients – Sarcoma UK to fund £2 million this year

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 research that could make the most difference for patients. She lost her mum to a sarcoma, which influenced her career path as research scientist. Sorrel tells us about feeling proud of what the charity has achieved, but even more excited about what’s to come.
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A graphic featuring an illustration of the author, Roger Wilson, holding a magnifying glass and studying a plant.

Aug 16 2025

ROGER EXPLORES… Natural therapies: Avoid anything promoted as alternative, rely on science instead

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 therapies. They may be desperate, because standard treatments are not working for them or their loved one. Others may be convinced that only ‘natural’ remedies should be used and reject chemotherapy or other medical therapies because they are not found in nature. Roger Wilson scrutinizes some of the approaches marketed in social media and elsewhere although they are not supported by evidence. He also gives examples of natural compounds that are scientifically tested in cancer treatment.
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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"

Advocacy & Tools

Our member organizations are very active in their countries and we try to support them wherever possible, and even more so in the future. Please stay tuned, there's more to come!

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!