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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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The Importance of Early and Accurate Diagnosis of Sarcomas 🩺🕒

Early diagnosis of sarcoma is crucial as it ensures that the tumor is discovered before the disease has spread extensively. This allows for treatment that is often less intensive or invasive compared to treatments required at more advanced stages. Additionally, an accurate diagnosis is essential for implementing the optimal therapy. Without it, patients may receive inappropriate treatments, either too aggressive or insufficient.

Dear patients and caregivers, please help us gather valuable data by completing our survey. Your insights will contribute to a better understanding of the diagnosis journey and help improve future outcomes for sarcoma patients worldwide.

Oct 19 2023

Understanding Mental Health in Rare Soft-Tissue Tumor Patients: Take the Survey and Share Your Insights

Mental health in patients with rare soft-tissue tumors   What is this online survey about? The purpose of this survey is to learn about the experiences and challenges of individuals with soft-tissue tumors. In doing so, we focus on a variety of mental health-related aspects which will help to gain a better understanding of patients…
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Oct 18 2023

Join our next Knowledge Spot Webinar – November 21st, 2023

Open clinical studies in soft tissue sarcomas, GIST and bone sarcomas Speakers: Nathalie Gaspar, France & Robin Jones, UK For rare cancers as sarcomas, clinical trials are an important part of the treatment concept, as standard therapies are often limited. They might be able provide an improved care for current patients, but they will certainly help…
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Aug 3 2023

Patient Advocacy @CTOS 2023

  It is our great pleasure to announce that patient advocacy will once again have a well-earned place at the Connective Tissue Oncology Society (CTOS) Annual Meeting. We will be hosting the Patient Advocacy Lounge at CTOS 2023 in Dublin: Patient Advocacy Lounge Liffey Hall 2, Convention Centre Dublin Open from Thursday, November 2 –…
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Aug 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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Jul 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.

Jul 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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Sep 6 2024

Bridging the Gap in Sarcoma Care: A Vision for South Africa

Sarcoma patients in South Africa struggle to find the expertise required for correct diagnosis and appropriate treatment. Lauren Pretorius, Chief Executive Office of Campaigning for Cancer, provides her vision on how sarcoma care in South Africa can be transformed.
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Jul 22 2024

Detecting sarcomas early is crucial

Diagnosing sarcomas is important but challenging: they are so rare that many doctors come across only a handful during their careers, and early symptoms are often vague. Soft tissue sarcomas being his specialisation, Dr. Avirup Chowdury from the Institute of Cancer Research in London, takes us through the diagnostic pathway and identifies key factors of an ideal scenario. He also give pointers for patients of suspicious symptoms.
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A graphic featuring a photo of Abbie Basson standing on the viewing platform of the Eiffel Tower, promoting the latest blog post from Sarcoma Patient Advocacy Global Network. The caption reads: Abbie's Determination to Sock it to Sarcoma! How one family's fight with Ewing's Sarcoma started a movement for speedy diagnosis in rural Western Australia.

Jul 3 2024

Abbie’s Determination to Sock it to Sarcoma!

Mandy Basson is a mother on a mission. Her daughter Abbie’s diagnosis of Ewing’s Sarcoma started a journey to improve diagnosis and treatment pathways for sarcoma patients in rural healthcare systems. This is the story of the birth of Sock it to Sarcoma!
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Jun 20 2024

Artificial intelligence – what does it mean to us?

We live in truly interesting times, finds Gerard van Oortmerssen, Co-Chair of the SPAGN Board. The latest wave of digital revolution, artificial intelligence, creates new opportunities for sarcoma patients and patient advocates. AI can facilitate access to information and peer-to-peer support. Moreover, it allows to collect patient reported outcomes and thus give sarcoma patients a stronger voice and say in research and care.
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Jun 13 2024

The lump is gone — finally!

About ten months ago, Roger Wilson shared with us the experience of finding a lump – again. It was a benign cyst, and for the first time, he had a choice as to whether or not to have a surgery. Roger decided to have the lump removed, and it is finally gone. Relieved and grateful to his tumour team, Roger gives us the continuation of his story.
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May 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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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!