Sarcoma Patient Advocacy Global Network - SPAGN

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...

08/12/2025

Save your spot now! The 16th SPAGN Annual Conference is happening May 1 to 3, 2026 in Stockholm, Sweden. Register today and join advocates, experts, and the global sarcoma community working to make a difference together.

Click here to register NOW!
https://www.sarcoma-patients.org/spagn-annual-conference-2026-2/

Registration information Venue Scholarship SPAGN Annual Conference 2026 With more than 70 member organizations from all continents of the world, we are looking forward to another SPAGN Annual Conference in 2026.   ✍️ Register now:  SPAGN Conference 2026, 1st – 3rd of May 2026 in Stockholm, S...

10/11/2025

Repurposing existing drugs could open new treatment paths for rare cancers like sarcoma. Learn why SPAGN's own Ornella Gonzato (Rete Sarcoma) and Roger Wilson (Sarcoma UK) believe this is an urgent opportunity for our community.

Read the blog: https://www.sarcoma-patients.org/blog/drug_repurposing_what_is_it/

07/11/2025

We’re looking at how drug repurposing can change the treatment landscape for the sarcoma community. Using medicines already approved means we can work with known safety profiles, reduce time-to-access and cost. For rare tumours such as sarcomas, this could fill gaps where options are lacking. Regulatory reform in the EU is aiming to enable non-profit developers to pursue these new indications. At Sarcoma Patient Advocacy Global Network we believe this is a crucial route for innovation and patient-centric change.

SPAGN's Ornella Gonzato (Rete Sarcoma) and Roger Wilson (Sarcoma UK ) in our latest blog: https://www.sarcoma-patients.org/blog/drug_repurposing_what_is_it/

An ongoing review of pharmaceutical regulations at the European Union’s level has the potential to unleash therapeutic innovations through drug repurposing. If approved, drug development could be influenced by evidence generated by academia or patient organizations. Why this would be a game change...