The Power of Patient Organisations

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…

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SPAGN member groups

  Please find our member organisations listed below. It gives you a sense of SPAGN’s extensive reach and the notable work our members do. This can be in the most challenging of environments, for example where healthcare, medicines and equipment for sarcoma treatments and care do not exist, are in short supply or not accessible…

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EU Certification

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…

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13th of July is GIST Awareness Day

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…

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Just published: New ESMO Guidelines for soft tissue sarcomas

  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

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Resources

Bone Cancer ESMO Bone Cancer Youth Brochure Sarcoma UK – Understanding Bone Sarcoma Patient Guide BCRT UK – Primary Bone Cancer Factsheet Sarcoma Guide in Italian (March 2018) Soft Tissue Sarcoma ESMO Patient Guide on Soft Tissue Sarcomas (different languages) Sarcoma Guide in Italian (March 2018) Chordoma Chordoma Foundation’s Expert Recommendations for the Diagnosis and…

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Just published: New ESMO Guidelines for soft tissue sarcomas (2)

  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

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Guidelines (2)

Medical societies such as the European Society of Medical Oncology (ESMO) in Europe or the National Comprehensive Cancer Network (NCCN) create guidelines which outline the standards of care for different types of cancer – among them guidelines for soft tissue sarcoma, bone sarcoma and GIST. These guidelines provide recommendations about diagnosis, treatment and follow-up for…

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Avapritinib approved in the EU for D842V-mutated GIST

End of September, a new therapy option for GIST patients with D842V mutation was approved for the EU: Avapritinib (Ayvakyt®) from Blueprint Medicines is a highly selective tyrosine kinase inhibitor. It is directed against the D842V mutation in exon 18, which has been shown to be resistant to all drugs available to date. The approval…

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