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Sarcomas, being so rare and complex, belong in the hands of experts! Please find below some guidance on where to find information about diagnosis, treatment and care of sarcomas, but also about current developments in establishing European Reference Networks (ERNs) in order to provide specialist care across Europe.

SPAEN is involved in a number of advocacy activities from raising public awareness of the challenges of sarcomas to advocating for equal access to promising new therapies to encouraging the establishment of sarcoma patient organizations in countries where they don’t yet exist. SPAEN representatives therefore sit on a range of advisory boards, committees and initiatives…

Why is it so important to collaborate? Sarcomas are rare and are also difficult to diagnose and treat. This leads to many and varying challenges for sarcoma patients, compared with more common cancers. Collaboration can be challenging. Partners with differing priorities and interests can gain strength from finding their common ground, sharing resources and working…

By Markus Wartenberg Cancer patient organisations around the world carry out enormously important work on behalf of patients and their families. Without them, the standard of care and support available to cancer patients would be severely compromised in some countries. Doctors and nurses increasingly find themselves in the position where they cannot give patients the…

Sarcomas are rare and complex conditions which make specialized care mandatory. However, due to both the scarcity of expertise and the scattering of small patient populations across the EU, it can be challenging to provide this highly specialized care for all patients.   So-called “European Reference Networks” (ERNs) pool the expertise among EU member states…

13th of July is GIST Awareness Day, and SPAEN is encouraging everyone to help bring attention to GIST and other rare cancers. The theme of GIST Awareness Day this year is HOPE! 2020 brought a global health crisis that has challenged GIST patients. This year’s GIST Awareness Day is dedicated to Nikhil Guhagarkar, our beloved…

  The updated ESMO-EURACAN-GENTURIS (European Society for Medical Oncology; European Reference Network for Rare Adult Solid Cancers; European Reference Network for Genetic Tumour Risk Syndromes) Clinical Practice Guidelines for Soft Tissue and Visceral Sarcomas have been published in Annals of Oncology at 22.7.2021. Please find them here: https://www.annalsofoncology.org/article/S0923-7534(21)02184-0/fulltext