Sarcoma Patient Advocacy Global Network - SPAGN

16/03/2026

Sarcoma patients, caregivers, and healthcare providers can help advance research by sharing real-world treatment experiences.

CURE ID is a free website and mobile app developed by the U.S. FDA and NIH that allows the community to document how existing drugs are being used to manage disease.

These shared experiences help researchers:

• Identify promising therapies
• Learn which treatments may not work
• Inform future clinical trials

Your experience could help guide future research and support better treatment options for sarcoma patients worldwide.

Take the survey:
https://bit.ly/CureID_Survey

Download the CURE ID app:
Apple App Store: https://apple.co/3NCCefm

Google Play: https://bit.ly/CureID_Android

Learn more:
https://cure.ncats.io

15/03/2026

Last chance to register for the 2026 SPAGN Annual Conference! Come join us in Stockholm, May 1-3. Go to https://bit.ly/SPAGN26 to get started!

28/02/2026

February 28th is . Sarcomas represent a cluster of rare cancers with more than 100 subtypes accounting for only 1% of all adult cancers around the world, and around 15-20% of childhood cancers. Follow our work to learn more about sarcomas, and follow for advocacy and solidarity with patients of rare diseases.

20/02/2026

Our newest blog by Magnus Carlsson, the former president of the Swedish sarcoma patient organization, Sarkomföreningen, explores the topic of whole genome sequencing and how one hospital is improving outcomes for sarcoma patients in Sweden.

This approach has led to more accurate diagnoses, better treatment decisions, and access to targeted therapies. For some patients, it has also helped avoid unnecessary treatments and delays in care.

This is a powerful example of how precision medicine can change lives for people with rare cancers like sarcoma.

Read more and share:
https://www.sarcoma-patients.org/blog/wgs-sweden/

Ahead of this year’s Annual Conference of SPAGN in Stockholm from 1- 3 May, the Swedish patient advocate Magnus Carlsson shares exciting developments in his country regarding genomic profiling of tumours suspicious of sarcoma. He explains why he believes that running Whole Genomic Sequencing routi...

12/02/2026

Researchers, doctors, patients and advocates are always searching for non-invasive and less invasive interventions that can effectively treat sarcomas without the need for major surgery.

In the newest edition of our ongoing series, "Roger Explores...Ultrasound", SPAGN's honorary president Roger Wilson unpacks the potential benefits of High Intensity Focused Ultrasound, or HIFU.

Roger takes a simple look at what this technology is, how it works, and why researchers are increasingly studying its use for cancers like sarcoma.

Read more and share at:

In the panoply of new technologies for treating cancer ultra-sound barely gets a mention. In this blog post Roger Wilson discovers how it is developing as a treatment. He explains why he believes this a worthwhile process to observe.

04/02/2026

World Cancer Day reminds us that cancer is not one disease and not one experience.

Sarcomas represent a wide variety of soft tissue and bone cancers spread amongst well over 100 subtypes that are rare, complex, and unfamiliar even within cancer support systems. Roughly 1% of all adult cancers (and approximately 15-20% of childhood and adolescent cancers) are classified as sarcomas.

Rare cancers do not cause less harm because they affect fewer people. They are harder to diagnose, harder to treat, or often very isolating. Rarity means fewer clinical trials, less research funding, limited support infrastructure, and longer paths to answers.

Social systems built around supporting more common cancers can unintentionally leave rare cancers like sarcoma patients behind.

World Cancer Day is one of the few moments when all cancers share the same space. On a day like today, visibility matters. Because being seen is often the first step toward being supported.

Today, we stand in solidarity with cancer patients everywhere and call upon the governments and research bodies of the world to commit to serving the unique needs of those affected by rare cancers.

No one should have to fight cancer and invisibility at the same time.

24/12/2025

Merry Christmas to our global sarcoma community. Thank you for your continued collaboration and partnership to change the world for sarcoma patients!

24/12/2025

22/12/2025

Your team at SPAGN will be taking a short break from December 22 through January 6. We will be back in the new year and look forward to continuing our work together.

22/12/2025

Our final SPAGN blog of 2025 is written by Executive Director Kathrin Schuster and looks back on a year of progress, challenges, and growth across the global sarcoma community.

Kathrin reflects on patient-driven advocacy, collaboration across borders, and the moments from 2025 that helped shape where we are today and where we go next.

If you want a thoughtful look at the year behind us and the path ahead, this is worth a few minutes.

Read the full blog here:
https://bit.ly/SPAGNblog2025

15/12/2025

Did you miss our newest blog? The Cancer Research Trust ( on IG) was recognized with multiple awards at the SPAGN Annual Conference this year, including recognition for the National Sarcoma Awareness Project. Since 2013 more than 2,500 UK medical students and resident doctors have taken part, with over 60 fully funded fellowships awarded to top scorers.

Learn more about the impact behind this work:
https://bit.ly/SPAGNblogBCRT

12/12/2025

Our newest blog highlights the great work at the Cancer Research Trust and the *multiple* awards they received at the SPAGN Annual Conference this year. BCRT's commitment to education, awareness, and patient driven advocacy continues to inspire progress across the global sarcoma community.

Please read and share!

The Bone Cancer Research Trust this year received the inaugural Paola Gonzato Memory Award, dedicated to projects in bone sarcoma. They also took the second place in SPAGN's Advocacy in Action Awards. From educating future doctors on sarcoma to raising vital awareness through marketing campaigns, bo...