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.


Apr 16 2024

Join the SPAGN Editorial Blog Team: Volunteer Job Opportunity

VOLUNTEER JOB POSTING: Editors for the SPAGN Blog” Voices of Sarcoma” We are looking for volunteers to serve on the Editorial team of SPAGN’s blog “Voices of Sarcoma”.   Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of national sarcoma patient advocacy organizations. Uniting more than 65 member groups from five continents, SPAGN…
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Mar 6 2024

First Webinar “What is a Sarcoma?” in Spanish and Portuguese, March 22, 2024!

Nos complace anunciar nuestro primer webinar para pacientes con sarcoma, cuidadores y defensores de pacientes de América Central y del Sur, realizado en español y portugués por especialistas en sarcoma de Argentina y Brasil en esta ocasión. El webinar tendrá lugar el 22 de marzo de 2024, sobre el tema “¿Qué es un sarcoma?”. Los…
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Feb 21 2024

EU-X-CT – Patient Questionnaire – Borders should not be barriers to clinical trials

The EU-X-CT initiative aims at revolutionizing patient access to clinical trials across borders. But before we delve into the project details, we want to emphasize something crucial – your participation! The data is being collected through a Patient Questionnaire which is available in multiple languages. Your insights are invaluable in understanding the current landscape of…
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Jan 23 2024

Insights from the EMA and EORTC Workshop on Developing Treatments for Ultra-Rare Sarcomas

Author: Gerry Feeney How can we develop new treatments in ultra-rare sarcomas, as a model for ultra-rare tumors?   On January 12, 2024, a workshop between regulators, researchers and patient advocates was held at the European Medicines Agency (EMA) premises in Amsterdam. The objective for the workshop was to discuss strategies to be more flexible…
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Dec 21 2023

SPAGN Annual Conference Registrations Are Now Open – Secure Your Spot Today!

Registration for SPAGN Annual Conference 2024 Is Now Open We are thrilled to announce that registration is now open for the SPAGN Annual Conference 2024, a radiant exchange of knowledge and inspiration for the global sarcoma community! Join us for this transformative event, meticulously crafted to facilitate learning, foster capacity building, and provide a unique…
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A graphic featuring a black and white photo of the FDA Headquarters in Washington D.C. and a headline describing the approval of Niro, a new treatment for desmoid tumors. The image is dated Nov 28, 2023. At the bottom is the logo for SPAGN.

Nov 28 2023

FDA Approves Groundbreaking Treatment for Rare Desmoid Tumors: Ogsiveo Offers New Hope

  Today, the U.S. Food and Drug Administration (FDA) has approved Ogsiveo (nirogacestat) tablets as the first therapy designed for adults with progressing desmoid tumors, a rare subtype of soft tissue sarcomas. Desmoid tumors, though non-cancerous, are locally aggressive, causing pain and impaired mobility. Traditionally, surgery was the go-to option, but with a high risk…
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Mar 29 2024

My lumpy life as a young adult

“After a shower, I noticed an odd lump on my left hip. Two weeks passed, but Lumpy—the name I declared this mysterious lump—remained. Luckily, I had a when in doubt, check it out mentality…” Read about Matt’s sarcoma journey and find out why sarcoma is like skydiving.
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Mar 7 2024

Somos raros, mas juntos somos mas fortes!

Juntas, duas pacientes brasileiras com tumor desmoide, Carolina Menezes e Georgia Garofalo, fundaram a Desmoide Brasil em 2021. Desde então, a Desmoide Brasil tem – entre outras iniciativas -- organizado simpósios, montado exposições, lançado um registro de pacientes, escrito um livreto de boas-vindas para novos pacientes, e estabelecido uma comunidade online ativa no Facebook e WhatsApp. Sua história é uma inspiração!
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Mar 7 2024

We are rare, but together we are stronger!

Together, two Brazilian desmoid tumor patients, Carolina Menezes and Georgia Garofalo, founded Desmoide Brasil in 2021. In the years since then, Desmoide Brasil has – among other things -- hosted symposia, organized an exhibition, launched a patient registry, penned a welcoming booklet for new patients, and established a thriving online community on Facebook and WhatsApp. Their story is an inspiration!
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Feb 20 2024

Should I join a clinical trial?

When you have been diagnosed with sarcoma you are faced with making important, and at times daunting decisions about treatment. Amongst the treatment choices, a clinical trial may be an option. But how do you know if it is a good option for you? Is it something you should even consider? Denise Reinke asks 6 key questions about clinical trials and provides helpful answers for sarcoma patients to consider.
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Feb 3 2024

No Losers Here!

War metaphors are used all the time in the context of cancer. “You’re a fighter! You got this!”, people say to a newly diagnosed patient. And the war metaphors seem to imply that if someone succumbs to cancer, it’s because they didn’t fight hard enough, or worse, gave up – “He lost his battle against cancer.” Many point out that such expectations are an additional burden placed upon a person who is already undergoing so much. But I wonder: Can the use of war metaphors be of help to us sarcoma patients as we strive to take an active role in our treatment?
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Jan 25 2024

Reflections for the New Year

2023 was a big year for SPAGN and the sarcoma patient community as a whole. We look back on the highlights of all that we achieved together and the many ways in which we grew, as we look to the year ahead.
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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!