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Position Papers
The SPAEN Clinical Sarcoma Research Paper on “The challenge of sarcomas: the patient advocacy group perspective” has been written by Roger Wilson, SPAEN honorary president and a sarcoma patient advocate for more than 20 years. The patient advocacy agenda covers every aspect of cancer treatment and care. This inevitably means that this review covers almost…
Read MoreCancer Profiles
Soon to come
Read MoreEwing Sarcomas
Introduction Ewing sarcoma is a rare and highly malignant tumor. About 3 in one million patients under the age of 15 and only 2,4 in one million above the age of 15 are affected by Ewing sarcoma in the Caucasian population; in other ethnicities the tumor is even less frequent. Ewing sarcoma is a disease…
Read MoreLeiomyosarcoma
Introduction Leiomyosarcoma (LMS) is one of the most common subtypes of soft tissue sarcoma (STS) and accounts for approximately 24%, LMS start from cells in a type of muscle tissue called smooth muscle or involuntary muscles – the brain has no conscious controlover them. They can be found in the walls of muscular organs like…
Read MoreUnderstanding 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…
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