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Welcome to Sarcoma Patient Global Advocacy Network!

Sarcoma Patient Global Advocacy Network (SPAGN), the international Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups, was founded in April 2009 with the aim of extending information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe and internationally. Acting in partnership with clinical experts, scientific researchers, industry and other stakeholders SPAGN is working to improve the treatment and care of sarcoma patients through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.

News

Apr 21 2023

Our latest SPAGN Newsletter is out!

Apr 21, 2023

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,…

Apr 13 2023

Your priorities in sarcoma research – make your voice heard!

Apr 13, 2023

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…

Feb 3 2023

Register now: SPAGN Annual Conference & New Horizons GIST 2023

Feb 3, 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…

Jan 16 2023

What are your priorities in bone sarcoma research?

Jan 16, 2023

Research Priorities in Bone Sarcomas Bone sarcomas are a diverse and hard to treat group of rare cancers. People with bone sarcomas (or primary bone cancer) have high unmet medical needs, and face a range of challenges including delays to diagnosis, disparities in access to treatments and a relative lack of clinical trial and research opportunities.…

Dec 7 2022

Global TGCT consensus paper published

Dec 7, 2022

The SPAGN expert-patient global consensus paper on the management of TGCT (Tenosynovial Giant Cell Tumor) has been published in “Cancer Treatment Reviews”. Over 50 experts and patient advocates have worked together over months to formalize guidelines based on the available evidence and experience within the expert community. We are happy and proud to bring…

Dec 2 2022

SPAGN Annual Conference & New Horizons GIST 2023:
Hand in Hand for the first time

Dec 2, 2022

Save the Date! 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. About the SPAGN Annual Conference: Since 2010, SPAEN/SPAGN has organized annual conferences to…

A group of protesters standing on a sidewalk with a grassy area behind them, holding signs advocating for sarcoma patients, appealing to the Irish Health Service Executive and the Minister of Health. One woman stands in the foreground holding a sign that says “Sarcoma Cancer Patients Do Matter.” Several of the protesters in the background hold bundles of yellow balloons symbolising sarcoma patients.

May 7 2023

Fighting for Sarcoma Patients in Ireland

May 7, 2023

In 2016, the employment contract for Ireland’s only sarcoma specialist in the public health system was not renewed. Advocates fought for the specialised care sarcoma patients need, and a new non-profit was born. This is their story.

A photo of four people, two women and two men, all members of the Sachin Sarcoma Society, posing for a photo in a hospital in India during the pandemic. All are wearing yellow ribbons to symbolise sarcoma awareness and companionship.

Apr 20 2023

How the Pandemic Produced a Sustainable Resource for Sarcoma Patients in India

Apr 20, 2023

Sachin Sarcoma Society, a SPAGN Member Group based in India, shares a guest blog about building support networks and overcoming the challenges of the COVID-19 pandemic.

Mar 29 2023

Portrait of a Patient Advocate: Kai Pilgermann

Mar 29, 2023

Would you like to know more about what sarcoma advocates around the world are doing and working on? We at Voices of Sarcoma want to introduce you to the advocates from our member groups. Recently, we interviewed Kai Pilgermann from the German Sarcoma Foundation.

Mar 7 2023

Improving Communication between Patients and Oncologists, Part 2: Tips for Getting it Right

Mar 7, 2023

Focusing on the goals we share with our oncologist -- treatment success and good quality of life -- can help us to overcome communication challenges. We can also adopt strategies for optimizing communication. These strategies involve a set of good habits and effective behaviors. Here are eight tips for improving communication.

Feb 1 2023

Improving Communication between Patients and Oncologists, Part 1: Rethinking Our Roles

Feb 1, 2023

If you are a sarcoma patient, a physician, or a patient advocate, you know that medical encounters are sometimes frustrating and dissatisfying for those involved. Communication can go wrong in many ways, both big and small. This is particularly unfortunate when it happens in encounters between patients and oncologists, as there is so much at stake.

Jan 11 2023

The Value of Patient Involvement in Research

Jan 11, 2023

We hear a lot about patient involvement in research these days. It’s a hot topic. But what does it actually mean? And more importantly, what benefits does it bring?

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!