Sarcoma Patient Advocacy Global Network - SPAGN

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/

09/11/2025

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...

31/10/2025

Did you catch our latest blog? Natalia Fernández Diaz-Cabal () writes about the Dutch Phyllodes Patient Group Patiëntenplatform Sarcomen (), honored for their work promoting patient treatment guidelines at the SPAGN Annual Conference in Washington D.C., April 2025.

Read more: https://bit.ly/SPAGNblog_PT

29/10/2025

Less than one week until our next Live with the Experts! Join us Monday, November 3, at 9:00 AM ET for an expert-led discussion on circulating tumor DNA (ctDNA) in sarcomas.

Submit your questions in advance or use the Q&A feature during the event. You can also share questions anytime using .

Register now: https://tr.ee/rWyatv

27/10/2025

What does it take to turn one person’s rare diagnosis into a treatment-guideline breakthrough? Meet Dutch patient-advocate Marloes van Esterik of Sarcomen: her journey with a borderline phyllodes breast tumour (a rare sarcoma-type growth) sparked the creation of a national patient group, international expert collaborations and a push for formal protocols.

Read more in SPAGN's latest blog: https://www.sarcoma-patients.org/blog/what_about_phyllodes_tumor/

This year, SPAGN awarded the third prize of Advocacy in Action Award to the Patiënten Platform Sarcomen in the Netherlands for their project on the management of phyllodes tumors, a rare form of cancer of the breast. By building expert partnerships and funding research, they pushed ahead the develo...

24/10/2025

Our official statement on the discontinued development of brigimadlin, from the SPAGN Board of Directors, Executive Director, and Team.

20/10/2025

Last week, we had the privilege of bringing together more than 50 sarcoma experts from various disciplines — alongside patient advocates — for an in-depth discussion on the challenges and controversies in the management of leiomyosarcoma (LMS).

This important meeting was held in collaboration with the National Leiomyosarcoma Foundation (US) as part of the International LMS Research Roundtable.

The discussions were expertly led by Prof. Bernd Kasper (Mannheim, Germany) and Dr. Fernando Campos (São Paulo, Brazil). Their leadership and dedication ensured open, constructive, and forward-looking exchanges.

The outcomes of these discussions will form the foundation for a consensus paper, which we aim to publish in 2026 — a collective effort to move the field forward and improve outcomes for LMS patients worldwide.

A huge thank you to all contributors for your expertise, collaboration, and unwavering commitment to improving the situation for sarcoma patients around the globe. 🌍💪

10/10/2025

Did you miss our newest blog? Read Cédric Bochsler's moving story of his son Shane's surprising diagnosis, and how they've turned their grief into action through the Association.

Read and share: https://bit.ly/SPAGNblog_Shane

10/10/2025

As we close out Bone Cancer Awareness Week, is proud to stand alongside the Bone Cancer Research Trust as we come together to shine a light on primary bone cancer.

We're raising awareness of the signs and symptoms through this year’s ‘Could It Be Bone Cancer?’ campaign.

Together we can help ensure symptoms are recognized earlier, leading to faster diagnoses and saving more lives.

Learn more about the signs and symptoms and other ways to get involved: https://www.bcrt.org.uk/awareness/bone-cancer-awareness-week-2025/

08/10/2025

It's Bone Cancer Awareness Week!

Too often, primary bone cancer isn’t considered by healthcare professionals before it's too late.

Our latest analysis revealed a concerning reality: people wait, on average, over seven months and make eight visits to healthcare professionals before receiving an accurate diagnosis.

This delay can cost lives.

In Bone Cancer Awareness Week, we’re calling for increased awareness amongst frontline healthcare professionals – and we need your help 🩺

Please share this post to spread the word and help end the delay to diagnosis.

To find out more, visit: https://ow.ly/YxUa50X5xmJ

08/10/2025

Our latest from member, Cédric Bochsler of the Shane Osteosarcoma Association, writes about his family's journey with his son Shane, and their work to honor Shane's legacy by strengthening the bonds across the global sarcoma community.

Read and share: https://www.sarcoma-patients.org/blog/founding-shane-osteaosarcoma-association/

When their eight-year-old son Shane passed away from osteosarcoma, Cédric Bochsler and his wife Sarah Jane chose to honour his memory by founding an association dedicated to raising awareness, funding research and supporting families affected by this rare cancer. At the occasion of the Childhood Ca...