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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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It's CTOS! Time to celebrate our sarcoma member organizations!

It's that time again—the Annual Meeting of the Connective Tissue Oncology Society (CTOS)! During the congress, we open the Patient Advocacy Lounge for our SPAGN members, providing a space to showcase their organizations, projects, and achievements. This is our way of celebrating their remarkable work for sarcoma patients.

For the duration of the CTOS Annual Meeting 2024, we’re also dedicating this space - our homepage - to highlight the impressive work of national sarcoma patient advocacy groups.

Curious to learn more about our members? Click here.

Want to learn more about our activites at CTOS 2024? Have a look here.

 

Survey Website Home

The Importance of Early and Accurate Diagnosis of Sarcomas đź©şđź•’

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.

Nov 25 2024

Tools Anyone Can Use: Become a Social Media Superhero

Creating impactful social media content is essential for patient advocacy groups, but it can often feel like a time-consuming challenge. SPAGN, in collaboration with New Horizons GIST, is hosting a special webinar to empower advocates with tools that simplify and enhance the content creation process. đź“… When: December 6th, 2024 đź•• Time: 6 PM CET…
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Nov 21 2024

“SPAGN Advocacy in Action Award 2025” & “Paola Gonzato Memory Award”

Call for Nominations  SPAGN is thrilled to announce the opening of nominations for the prestigious Advocacy in Action Award 2025 and the newly introduced Paola Gonzato Memory Award for impactful projects in sarcoma patient advocacy.   Advocacy in Action Award 2025 Since its inception in 2017, the Advocacy in Action Award has highlighted exceptional initiatives…
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Nov 5 2024

SPAGN Annual Conference 2025

We are thrilled to announce that the SPAGN Annual Conference 2025 will be held in Washington D.C., USA, from April 11-13, 2025. This will be our first conference in the United States, marking a significant milestone for our global community. This highly anticipated event will bring together patient advocates from around the world to discuss…
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Oct 2 2024

Patient Advocacy @CTOS 2024

  We are delighted to announce that patient advocacy will once again have a valued presence at the Connective Tissue Oncology Society (CTOS) Annual Meeting. This year, we are pleased to host the Patient Advocacy Lounge at CTOS 2024 in San Diego: Patient Advocacy LoungeRoom Balboa ABC, Second Level, Manchester Grand Hyatt San DiegoOpen from Thursday, November…
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Sep 23 2024

ACF’s European Manifesto: Addressing Critical Gaps in Research and Treatment of Rare Cancers🎗️

The Anticancer Fund (ACF) has launched its European Manifesto 2024, presenting a forward-looking strategy to position Europe as a global leader in cancer treatment innovation. With cancer rates set to rise dramatically-35 million new cases projected by 2050-there’s no time to waste. đź•’ SPAGN fully supports the goals set out by the ACF in its…
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Aug 9 2024

Key Findings from Phase II of the SPAGN Priority Setting Partnership published đź“ť

The Sarcoma Patient Advocacy Global Network (SPAGN) has published the results of the second phase of its Priority Setting Partnership (PSP), focusing on identifying research and patient advocacy priorities in sarcoma care, in “BMC Cancer”. This initiative is groundbreaking as it actively involves patients and carers in shaping the research agenda, ensuring their voices are…
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Nov 12 2024

Kids with cancer encourage each other

Having gone through herself a terribly difficult childhood - being diagnosed with Ewing sarcoma at the age of 3 ½ years - Marcsi Benkő (14) wanted to help other children fighting cancer in coping with the challenges they face during treatment. She remembered how the other kids in the hospital ward had helped her by explaining things that she could not understand, and she was deeply scared of. The idea of producing short video messages narrated by peer children in their own words emerged. Read here Marcsi’s touching story about her journey from a child with Ewing sarcoma to a teenage patient advocate.
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Oct 31 2024

Not just any cancer information day…. from the diary of a patient advocate

More than five years after therapy, our Editor-in-Chief Gabi Ott went back to the hospital where she was treated. But this time, it was not as a patient but as a patient advocate. Together with her colleagues, she attended to people looking for information on sarcoma. Being in the building also brought back memories of her darkest days – and the many people who helped her during this journey. A tribute to the nurses and doctors, and a patient organization.
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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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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!