EORTC is currently conducting A phase III randomized study of preoperative radiotherapy plus surgery versus surgery alone for patients with Retroperitoneal sarcomas (RPS) - STRASS. SPAEN has developed a leaflet/article explaining the STRASS study in non-technical terms with the aim to help patients and carers understand what the study might be able to offer them. This summary is not part of the study information and is not intended to replace any of the study information which is part of the informed consent process.
Sarcomas are rare malignant tumors, with an overall incidence of 6/105/year. Bone and soft tissue connective tissue tumours encompass more than 50 different rare histotypes and more than 150 different molecular subtypes. The incidence of individual rare sarcomas subtypes is often less than 0.5/105/year. Given the rarity of sarcomas as a group, but even more as individual entities, few prospective clinical trials testing local or systemic treatments have been performed in specific subtypes of sarcomas. Clinical trials in specific histological and molecular subtypes of sarcoma can only be performed through integrated clinical networks, centres of clinical excellence, supported by translational analysis.
The campaign Rare Cancers Europe has been developed by ESMO in collaboration with major European stakeholders in rare cancers and rare diseases to address challenges and propose solutions to eliminate the hurdles that patients with rare cancers, researchers, medical professionals and the pharmaceutical industry working in this field face every day. Rare Cancers Europe (RCE) has been established as a partnership of cooperating organisations that work together to place the issue of rare cancers firmly on the European policy agenda, to identify and promote appropriate solutions and to exchange best practice. SPAEN has now been welcomed into the partnership initiative. http://www.rarecancerseurope.org
SPAEN regrets the released information from AB Science: “Masitinib significantly extends overall survival as second-line drug for GIST…”
On the 1st of February 2012 the “Global GIST Community” was confronted by a press release from a pharmaceutical company named AB Science to the financial media and a supporting Email “Late Breaking News” from the Life Raft Group (NJ, USA) to the GIST Patient Community. During the following days, leading GIST Experts and GIST Patient Groups around the world clearly expressed their concern about the content of this press release and manner of its delivery.
Review paper "The Combination of Surgery and Imatinib in GIST: A Reality for Localized Tumors at High Risk, an Open Issue for Metastatic Ones"
The film “Living with GIST” from the Swiss GIST group wins a Silver Edi. On 3rd November 2011, the twelfth Edi film prize for the best advertising, industrial and corporate films in Switzerland was awarded. The film won in the “Corporate: Internal Communication Training” section.
This film shows the way from a correct diagnosis to treatment and dealing with the rare cancer GIST through different patient stories. It is focussing on the global networking of patients and physicians and the collaboration of various medical disciplines and research. The focus of all these efforts is the patient. Three patients are talking about their fate, their lives and their cancer journey. The trailer of the film with English subtitles is available on YouTube.
Since its founding in 2004, the Liddy Shriver Sarcoma Initiative has had an international focus. Back then, we started by publishing the “Sarcoma Facts” in five languages when we launched our website. Today we list them in twenty-three languages. We also employed the slogan “Sarcoma Knows No Borders,” because it is a disease that can be found anywhere in the body and everywhere in the world. We want our efforts to include all those affected by sarcoma and everyone who works to help those with sarcoma. Read more about our efforts and their international focus.
SPAEN is delighted to provide a comprehensive report of the ASCO 2011 medical highlights in GIST and Sarcomas from Dr Axel Le Cesne, Gustave Roussy Institute, Villejuif (France). This ASCO 2011 meeting was marked by the dedication of five full sessions (including plenary and parallel) to GIST and Sarcomas, a massive program fully vindicated by the many exciting advances in research reported on GISTS and Soft Tissue Sarcomas.