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Understanding Bone Sarcomas
The most common bone sarcomas are osteosarcoma, Ewing’s sarcoma, chondrosarcoma, giant cell tumours and chordomas, with osteosarcomas and chondrosarcomas being the most frequent, accounting for over half of all the malignant bone tumour diagnoses. Osteosarcoma is the most frequent primary cancer of bone. It is estimated that per year, 2-3 persons in one million are…
Read MoreStrass Trial
10 FACTS – STRASS Trial WHO is the trial for? • Patients with histologically confirmed retroperitoneal sarcoma (RPS)• No metastasis • Previously untreated • Tumor must be operable, suitable for radiotherapy and radiologically measurable (RECIST 1.1)• Overall health status of the patient has to be good (WHO performance status 0-2)• No other malignant tumor disease…
Read MoreStudy Directory
Taking part in a clinical trial can be a good choice but it is often hard to find a clinical trial that is right for you. Many patient organizations and websites maintain lists of clinical trials. The following tables list some of the clinical trials available worldwide. Please note: this is not an exhaustive list,…
Read MorePatients & Studies
10 Questions About Trials to Ask Your Doctor Taking part in a clinical trial can be a good choice but it is often hard to find a clinical trial that is right for you. To find clinical trials: Talk to your doctor who may have a clinical trial available at your hospital Ask if there are…
Read MoreTraining Courses
WECAN Academy 2019 The WECAN Academy 2019 combined two leading capacity building programmes in patient advocacy: WECAN Smart Start: Starting and Building a National Non-Profit Patient Group focused on “beginners” in patient advocacy, and the WECAN Masterclass on Patient Advocacy on experienced patient advocacy leaders. These two 3-day training programmes were held for 6-9 July…
Read MoreConference/Project Reports
Please find below reports from the most important congresses and projects: ESSO 39The annual meeting of the European Society of Surgical Oncology was held this year in Rotterdam from 8 until 10 October. Although ESSO covers the entire field of cancers, it was of interest to SPAEN for a number of reasons. First because…
Read MoreExpert/Patient Roundtables
In close collaboration with experts, patients and the SPAGN board, SPAGN identifies specific topics and brings the key players together to discuss and form a common statement or publication to address the topic and spread knowledge. Recent roundtables were: “Genetic Predispositions in Sarcomas” Roundtable November 11, 2025, Boca Raton, USA Ahead of CTOS 2025, over…
Read MoreAdvocacy in Action Award
Advocacy in Action Award 2025 Winners Patient advocacy continues to be a powerful force for progress—amplifying voices, breaking down barriers, and sparking meaningful change. In the world of sarcoma, advocacy plays a key role in driving awareness, improving care, and supporting those impacted by this rare group of cancers. For 2025, we are once again…
Read MoreInvolvement in EU and International Projects
Change can only happen if all stakeholders are working together. That’s why SPAEN is also active in EU-funded and international projects: STREXIT2 SELNET The SELNET project (SELNET has received funding from the European Union’s Horizon 2020 research and innovation programme) seeks to create a European and Latin American multidisciplinary network of clinical and translational specialists…
Read MoreUnderstanding GIST
Since GIST hardly produce any symptoms, they are often quite large before they are discovered. Those tumors are often discovered during emergency surgery for unexpected perforation of the gastrointestinal tract and consequent bleeding.The type of symptoms and when they first occur depends on the size and location of the tumor. If the tumor is situated…
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