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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.

Welcome to Sarcoma Awareness Month!

This July, we come together to shine a light on the importance of "Early and Accurate Diagnosis in Sarcoma", highlighting the crucial need for timely and precise detection of this disease. Our goal is to spread and to gather knowledge and support those affected. Join us in raising awareness, sharing stories, and standing strong with the sarcoma community.

Learn how you can become a part of this campaign and visit our SPAGN awareness page 🌐 here!

Together, we can make a difference and bring hope to countless lives. Let's unite for Sarcoma Awareness Month!

Visit our Sarcoma Awareness website here!

Amy Bruno-Lindner, † June 2024

It is with great sadness that we learned about the passing of Amy Bruno-Lindner in June 2024.

Amy was co-founder of GIST Support Austria. She was an active part of the international GIST patient community for many years, before joining the SPAGN Board of Directors in 2021 as appointed board member. During that time, she founded the SPAGN blog “Voices of Sarcoma” end of 2022. Amy was editor-in-chief till the end of 2023 and later on stayed on the editorial team of the blog as in integral part of the team.

Amy was a dedicated patient advocate for the GIST and sarcoma patient community and a warm and caring person full of enthusiasm and positive energy as well as curiosity and intelligence.

Our sincerest condolences go out to Amy’s family and friends. She will be dearly missed.

News

Jun 18 2024

Sarcoma Awareness Month 2024 is approaching quickly: Join our campaign!

Jun 18, 2024

Sarcoma Awareness Month is held annually in July, a time when the global sarcoma community comes together with a unified mission: to raise awareness about this rare and often overlooked group of cancers and to highlight the unique challenges faced by patients and their families. The Importance of Early and Accurate Diagnosis This month is…

May 17 2024

What is a sarcoma specialist center?

May 17, 2024

On May 13, 2024, SPAGN published a paper in “Cancers” on the definition, core principles and features of a sarcoma specialist center, developed by patient advocates and healthcare professionals together. The management of sarcomas in specialist centers delivers significant benefits. In much of the world, specialists are not available, and the development of expertise is…

Apr 16 2024

Join the SPAGN Editorial Blog Team: Volunteer Job Opportunity

Apr 16, 2024

VOLUNTEER JOB POSTING: Editors for the SPAGN Blog” Voices of Sarcoma” We are looking for volunteers to serve on the Editorial team of SPAGN’s blog “Voices of Sarcoma”. Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of national sarcoma patient advocacy organizations. Uniting more than 65 member groups from five continents, SPAGN…

Mar 6 2024

First Webinar “What is a Sarcoma?” in Spanish and Portuguese, March 22, 2024!

Mar 6, 2024

Nos complace anunciar nuestro primer webinar para pacientes con sarcoma, cuidadores y defensores de pacientes de América Central y del Sur, realizado en español y portugués por especialistas en sarcoma de Argentina y Brasil en esta ocasión. El webinar tendrá lugar el 22 de marzo de 2024, sobre el tema “¿Qué es un sarcoma?”. Los…

Feb 21 2024

EU-X-CT – Patient Questionnaire – Borders should not be barriers to clinical trials

Feb 21, 2024

The EU-X-CT initiative aims at revolutionizing patient access to clinical trials across borders. But before we delve into the project details, we want to emphasize something crucial – your participation! The data is being collected through a Patient Questionnaire which is available in multiple languages. Your insights are invaluable in understanding the current landscape of…

Jan 23 2024

Insights from the EMA and EORTC Workshop on Developing Treatments for Ultra-Rare Sarcomas

Jan 23, 2024

Author: Gerry Feeney How can we develop new treatments in ultra-rare sarcomas, as a model for ultra-rare tumors? On January 12, 2024, a workshop between regulators, researchers and patient advocates was held at the European Medicines Agency (EMA) premises in Amsterdam. The objective for the workshop was to discuss strategies to be more flexible…

Jul 22 2024

Detecting sarcomas early is crucial

Jul 22, 2024

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.

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!

Jul 3, 2024

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!

Jun 20 2024

Artificial intelligence – what does it mean to us?

Jun 20, 2024

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.

Jun 13 2024

The lump is gone — finally!

Jun 13, 2024

About ten months ago, Roger Wilson shared with us the experience of finding a lump – again. It was a benign cyst, and for the first time, he had a choice as to whether or not to have a surgery. Roger decided to have the lump removed, and it is finally gone. Relieved and grateful to his tumour team, Roger gives us the continuation of his story.

May 28 2024

From chaos to control: Three decades in the continuum of care

May 28, 2024

We celebrate with V Care 30 years of patient advocacy work in Mumbai, India and other states! Integral part of this pioneering cancer patient association is Spandan, a welcoming space for those affected by sarcoma. Spandan means ‘heartbeat’ in English. Vandana Gupta, founder of V Care, explains their mission, success and lessons learnt along the way.

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!

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!