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Deutsche Sarkom Stiftung
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Dear SPAGN Members and Friends,

We’re excited to welcome the amazing new organisations that joined SPAGN in the second half of 2025 🎉. Each of you brings passion, energy, and dedication to research, advocacy, awareness, and patient support—and together, we’re making the patient voice louder and stronger across the sarcoma community.

It’s wonderful to have you on this journey with us, and we can’t wait to see what we can achieve together!

All the best from the
SPAGN Board of Directors & Team
Leiomyosarcoma Research UK - United Kingdom
Established in 2024, this is the only UK charity dedicated specifically to leiomyosarcoma research. Founded by three LMS patients, the organisation is building the Pathfinder Network to connect experts, hosting research workshops, and working to improve diagnosis within the NHS. They collaborate closely with Sarcoma UK and are a sister organisation to LMSDR.org in the United States.
Ultra Rare Sarcoma e. V. - Germany
Founded in 2025 as a registered non-profit, Ultra Rare Sarcoma e. V. focuses on ultra-rare sarcoma subtypes such as ASPS and EHE. With around 30 members, the organisation is active in awareness initiatives, including the “BEWEG WAS” campaign, and is dedicated to strengthening advocacy and visibility for ultra-rare sarcomas.
Edward Showler Foundation - United Kingdom

The Edward Showler Foundation is a UK registered charity dedicated to funding research to find a cure for Clear Cell Sarcoma, established in memory of Dr Edward Showler, who died from the disease in 2017. The Foundation has raised over ÂŁ1 million to support international research collaborations, fund a dedicated research programmes etc.
Synovial Sarcoma Foundation - USA
Founded in 2025 as a registered 501(c)(3) non-profit, the Synovial Sarcoma Foundation focuses on advocacy, awareness, and community-building for people affected by synovial sarcoma. Their work includes targeted resources, expert webinars, research funding, peer support initiatives, and advocacy for patient involvement in research and access to clinical trials.
 
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Sarcoma Patient Advocacy Global Network e.V./Assoc., 
Untergasse 36,
61200 Wölfersheim/Germany