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Welcome to 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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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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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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Apr 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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Apr 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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Sep 6 2023

I Lost My Son and Found My Purpose

We spoke with the founder of the first sarcoma organization in Bulgaria, Lidiya Vitanova, who lost her young son, Niki, to sarcoma. Lidiya talked to us about the sarcoma situation in her country as well as her motivation and goals for improving the outcomes of people diagnosed with sarcoma and other rare diseases.
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Aug 7 2023

Check It Out!

Sarcoma patient and patient advocate Roger Wilson shares his experience of finding a lump – what happened and what he learned.
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Jul 20 2023

When the Patient Becomes the Researcher

Dr. Sydney Stern, biomedical scientist and patient advocate, describes her personal journey as a patient with a rare tumor disease and her quest for answers through science. She calls for patients to get involved in research and outlines options for doing so.
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A photo of Prof. Dr. Bernd Kasper standing on a red bridge which is out of focus.

Jul 17 2023

Facilitating Collaboration in Sarcoma Care

In this interview, SPAGN Communications Director Cory Archibald speaks with Dr. Bernd Kasper, to learn about the role of patient advocacy groups like SPAGN in strengthening global cooperation to improve patient outcomes.
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Jul 7 2023

5 Questions Every Patient Should Ask When Searching for Information about Sarcoma

Getting a sarcoma diagnosis is a life-altering event that brings a wave of emotions and questions. Once the initial shock subsides, many patients turn to the internet in search of information about their disease. Despite the common advice of "Whatever you do, don't google it!", seeking information about your disease and its treatment can be empowering. Instead of discouraging patients from seeking information, it's important to guide them towards reliable sources of information and support them in becoming health literate.
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Jun 30 2023

What Makes Sarcoma so Challenging?

July is Sarcoma Awareness Month. The aim is to promote an understanding of sarcoma, a rare form of cancer that originates in the connective tissues of the body, such as bones, muscles, and nerves. Unfortunately, sarcomas pose major challenges in diagnosis, management, treatment and research. Sarcoma Awareness Month highlights the goals of the sarcoma community in overcoming these challenges.
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ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
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ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
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ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
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ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
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ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
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Alberto Martinez Gutierrez from the Fundación Mari Paz Jimenez Casado (Spain) explains the importance of specialized training and research in sarcoma. Photo by Uli Deck, Artis Photography
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ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
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ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
ARTIS-Uli Deck// 11.05.2023 - 13.05.2023 - Sarcoma Patient Advocacy Global Network - 13. SPAGN Annual Conference, Dublin- Irland
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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!