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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.

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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Nov 22 2023

ESGO-EURACAN-GCIG Uterine sarcoma guidelines

  In 2023, the European Society of Gynaecological Oncology (ESGO), the EURACAN, a European Reference Network for all rare adult solid cancers and the Gynecologic Cancer InterGroup (GCIG) have agreed to start a new joint project with the goal of developing guidelines on the complete management of patients with uterine sarcomas, covering low-grade endometrial stromal…
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Oct 23 2023

WECAN Academy 2023: Empowering Cancer Patient Advocates in Europe

  WECAN – The Workgroup of European Cancer Patient Advocacy Networks was established in 2015 when 15 umbrella cancer patient advocacy organizations came together to initiate the informal network. WECAN was born out of the true need for the cancer patient community to share experiences and work together. SPAGN is one of the current over 20…
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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!