Home

Welcome to Sarcoma Patient Global Advocacy Network!

Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of national Sarcoma Patient Advocacy Organizations. Today, approx. 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.

News

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…

Nov 23 2022

Recording available: SPAGN Knowledge Spot – Gamma Secretase Inhibitors in Desmoid Tumors

Nov 23, 2022

“Gamma Secretase Inhibitors – A new paradigm in Desmoid Tumors?” December 1, 2022, 5pm CET / 11am ET / 9:30pm IST Update on medical therapies in desmoid tumors, by Prof. Bernd Kasper, University Hospital of Mannheim, Germany, moderated by Christina Baumgarten, SOS Desmoid Germany, SPAGN Board Member A joint event by SPAGN and the Sarcoma…

Nov 22 2022

SPAGN Annual Conference 2023 – Save-the-Date

Nov 22, 2022

Since 2010, SPAEN/SPAGN has organized annual conferences to bring sarcoma, GIST and desmoid patient groups, experts, researchers and industry together. These conferences were held each year as onsite meetings with approx. 80-100 participants from over 25 countries including patient advocates, leading sarcoma experts and representatives of the pharma industry. The three-day conference focuses on research…

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?

Dec 27 2022

Looking back on 2022 and ahead to 2023

Dec 27, 2022

How was 2022 for your organization? What accomplishments are you proud of? We at SPAGN are looking back at what we have done in the past year to impact the treatment and survival of sarcoma patients. We also want to look ahead to our plans for the near future.

Dec 1 2022

How to Create High-quality Information Materials for Patients, Part 1: Checklist of Key Steps

Dec 1, 2022

As any advocate knows, an important task of a patient organization is to produce information materials for patients and their caregivers. This task is not as easy as it looks -- after all, most of us advocates have not been trained in journalism or graphic arts or medicine. We may wonder: What makes a brochure or a website text for patients successful? How can our patient advocacy organization ensure the quality of the patient resources we produce?

Nov 25 2022

Advocacy 2.0: The Evolving Role of Advocates in Rare Cancers

Nov 25, 2022

What do you say when someone asks you what a patient advocate does? If you asked me, I would answer from my own experience: Advocates work with patients and their families. We support people and we share information with them. However, as important as these activities may be, there is so much more that we advocates can do.

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!