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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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??? 1 2023

Quality of life in sarcomas?

Incorporating the patient voice in sarcoma research: How can we assess quality of life of sarcoma patients? Soft tissue and bone sarcoma patients form a diverse and rare patient group. Quality of life questionnaires used in research and clinical practice are not always complete and relevant for the unique experiences of this patient group. Take…
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??? 24 2023

Read the latest in our SPAGN Newsletter!

  The last few months have been filled with activities, from the SPAGN Annual Conference and New Horizons GIST to our surveys and now Sarcoma Awareness Month in July. And there’s more to come. Read on here in our latest newsletter (July 2023) to learn what the SPAGN team has been up to . Want to…
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Four people pose for a photo with certificates of recognition that have just been awarded.

??? 10 2023

Advocacy in Action Award 2022: The Winners

  Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We want to celebrate and honour outstanding practices, projects, initiatives or campaigns and the creators working behind these activities with the SPAGN Advcoacy in Action Award. We are thrilled with all the…
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??? 21 2023

Our latest SPAGN Newsletter is out!

  The sarcoma community is active – there’s lots for you to check out, to join and make your voice heard as well. Read all updates in in the sarcoma world and SPAGN in our latest newsletter (April 2023) here. Learn more about our survey about “Priorities in Sarcoma Resarch”, our new team member Cory,…
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??? 13 2023

Your priorities in sarcoma research – make your voice heard!

The need for patient involvement in scientific research is curcial as there is a mismatch between what patients, clinicians, and researchers would want to see researched, and what is actually being researched. It is our aim to bridge this mismatch and open up the discussion between patients and clinicians to agree on priorities for future research. Through our Patient-Powered…
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??? 3 2023

Register now: SPAGN Annual Conference & New Horizons GIST 2023

Register now! 2023 SPAGN Annual Conference May 11-13, 2023 in Dublin/Ireland NEW HORIZONS GIST May 13-15, 2023 in Dublin/Ireland For the first time ever, the SPAGN Annual Conference and the New Horizons GIST Meeting will be held hand in hand. Since 2010, SPAEN/SPAGN has organized the SPAEN/SPAGN Annual Conferences to bring sarcoma, GIST and desmoid…
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??? 28 2024

From chaos to control: Three decades in the continuum of care

We celebrate with V Care 30 years of patient advocacy work in Mumbai, India and other states! Integral part of this pioneering cancer patient association is Spandan, a welcoming space for those affected by sarcoma. Spandan means ?heartbeat? in English. Vandana Gupta, founder of V Care, explains their mission, success and lessons learnt along the way.
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A graphic featuring a photo of the award winners from this year's Advocacy in Action Awards with the title of the post and a link to the blog.

??? 7 2024

Six great examples of sarcoma patient advocacy to follow this year!

This year's winning projects of the SPAGN Advocacy in Action Awards demonstrate the creativity, deep insights into patients concerns, dedication and professionalism of our members to help improve sarcoma patients access to care and quality of life. A big applause!
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??? 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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??? 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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??? 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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??? 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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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!