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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.

News

Nov 28 2023

FDA Approves Groundbreaking Treatment for Rare Desmoid Tumors: Ogsiveo Offers New Hope

Nov 28, 2023

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…

Nov 22 2023

ESGO-EURACAN-GCIG Uterine sarcoma guidelines

Nov 22, 2023

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…

Oct 23 2023

WECAN Academy 2023: Empowering Cancer Patient Advocates in Europe

Oct 23, 2023

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…

Oct 19 2023

Understanding Mental Health in Rare Soft-Tissue Tumor Patients: Take the Survey and Share Your Insights

Oct 19, 2023

Mental health in patients with rare soft-tissue tumors What is this online survey about? The purpose of this survey is to learn about the experiences and challenges of individuals with soft-tissue tumors. In doing so, we focus on a variety of mental health-related aspects which will help to gain a better understanding of patients…

Oct 18 2023

Join our next Knowledge Spot Webinar – November 21st, 2023

Oct 18, 2023

Open clinical studies in soft tissue sarcomas, GIST and bone sarcomas Speakers: Nathalie Gaspar, France & Robin Jones, UK For rare cancers as sarcomas, clinical trials are an important part of the treatment concept, as standard therapies are often limited. They might be able provide an improved care for current patients, but they will certainly help…

Ago 3 2023

Patient Advocacy @CTOS 2023

Ago 3, 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 –…

A graphic featuring a photo of the award winners from this year's Advocacy in Action Awards with the title of the post and a link to the blog.

May 7 2024

Six great examples of sarcoma patient advocacy to follow this year!

May 7, 2024

This year's winning projects of the SPAGN Advocacy in Action Awards demonstrate the creativity, deep insights into patients concerns, dedication and professionalism of our members to help improve sarcoma patients access to care and quality of life. A big applause!

Mar 29 2024

My lumpy life as a young adult

Mar 29, 2024

?After a shower, I noticed an odd lump on my left hip. Two weeks passed, but Lumpy?the name I declared this mysterious lump?remained. Luckily, I had a when in doubt, check it out mentality?? Read about Matt?s sarcoma journey and find out why sarcoma is like skydiving.

Mar 7 2024

Somos raros, mas juntos somos mas fortes!

Mar 7, 2024

Juntas, duas pacientes brasileiras com tumor desmoide, Carolina Menezes e Georgia Garofalo, fundaram a Desmoide Brasil em 2021. Desde então, a Desmoide Brasil tem ? entre outras iniciativas -- organizado simpósios, montado exposições, lançado um registro de pacientes, escrito um livreto de boas-vindas para novos pacientes, e estabelecido uma comunidade online ativa no Facebook e WhatsApp. Sua história é uma inspiração!

Mar 7 2024

We are rare, but together we are stronger!

Mar 7, 2024

Together, two Brazilian desmoid tumor patients, Carolina Menezes and Georgia Garofalo, founded Desmoide Brasil in 2021. In the years since then, Desmoide Brasil has ? among other things -- hosted symposia, organized an exhibition, launched a patient registry, penned a welcoming booklet for new patients, and established a thriving online community on Facebook and WhatsApp. Their story is an inspiration!

Feb 20 2024

Should I join a clinical trial?

Feb 20, 2024

When you have been diagnosed with sarcoma you are faced with making important, and at times daunting decisions about treatment. Amongst the treatment choices, a clinical trial may be an option. But how do you know if it is a good option for you? Is it something you should even consider? Denise Reinke asks 6 key questions about clinical trials and provides helpful answers for sarcoma patients to consider.

Feb 3 2024

No Losers Here!

Feb 3, 2024

War metaphors are used all the time in the context of cancer. ?You?re a fighter! You got this!?, people say to a newly diagnosed patient. And the war metaphors seem to imply that if someone succumbs to cancer, it?s because they didn?t fight hard enough, or worse, gave up ? ?He lost his battle against cancer.? Many point out that such expectations are an additional burden placed upon a person who is already undergoing so much. But I wonder: Can the use of war metaphors be of help to us sarcoma patients as we strive to take an active role in our treatment?

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!