Sarcoma Patient Advocacy Global Network - SPAGN

03/05/2026

Powerful discussion on the challenges of sarcomas in AYA and children. Panelists are all survivors of sarcoma diagnosed as children or young adults, sharing experiences of their friends, peers, teachers and more struggling to understand and support their experience. Noted was one of the biggest challenges being aftercare - the feeling of being cast out into the world after treatment with no support.

Patient advocacy groups like our SPAGN members play a critical role in connecting patients and their families with support systems and people who understand what they are experiencing.

Thank you to all of our panelists for such an important conversation.

02/05/2026

SPAGN : Filming videos at for this year's campaign!

01/05/2026

23/04/2026

A message from our friends at the STREXIT 2 Project:

"We are happy to announce a new blog series created in collaboration between the Sarcoma Patient Advocacy Global Network ( ) and the STREXIT 2 Project.

"In 2026, the series will explore key topics in clinical research, including international collaboration in rare cancer research, the role of Horizon Europe in driving innovation, the integration of real-world data in cancer trials, and how pragmatic trial designs can bring clinical research closer to patients.

"The first blog explores why international collaboration is essential to advancing rare cancer treatment."

Read the first blog here:
https://bit.ly/SPAGN_STREXIT1

23/04/2026

Don't miss our joint blog series with the wonderful team at the STREXIT 2 Project! Together we are exploring the importance of involving patient advocates and international cooperation to advance care for rare cancers. Link to the first installment below, and stay tuned for more.

We are happy to announce a new blog series created in collaboration between the Sarcoma Patient Advocacy Global Network - SPAGN and the STREXIT 2 Project.
In 2026, the series will explore key topics in clinical research, including international collaboration in rare cancer research, the role of Horizon Europe in driving innovation, the integration of real-world data in cancer trials, and how pragmatic trial designs can bring clinical research closer to patients.

The first blog explores why international collaboration is essential to advancing rare cancer treatment.

Read the first blog post here:
https://strexit-horizon.eu/exploring-clinical-innovation-a-new-blog-series/

European Commission EORTC

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.