Uncategorized-EN
Infographics
Infographics translate information into easy-to-understand visuals. Please feel free to use these infographics for your communication. What are sarcomas? Key facts about sarcomas (please download your preferred language: Englisch, French, German) Merken Merken Merken
Read MoreGroup Locator
{loadposition map} This is a worldwide map of Sarcoma patient groups (incl. SPAEN member organisations). Please move your mouse over the countries to see listed patient groups and then click to see more details. Please click to take a look at all SPAEN Members. If you know a group which is not listed here, or…
Read MoreBecome a Member
SPAEN welcomes every sarcoma, GIST or desmoid patient organisation worldwide, who pledge to conform our Code of Practice, as full member. Full members are entitled to vote at the annual general meeting (AGM). SPAEN also invites individuals who are interested in starting sarcoma, GIST or desmoid support groups in their own countries as well as…
Read MoreOur Members
The network only is as strong as its members. SPAEN welcomes every sarcoma, GIST or desmoid patient group and individuals interested in sarcomas worldwide to become part of our network and thus strengthen it. Why join SPAEN? Enjoy information exchange with other members, receive SPAEN newsletters and briefings, an invitation to SPAEN’s annual meeting,…
Read MoreSoft Tissue Sarcomas
Adult soft tissue and visceral sarcomas (excluding gastrointestinal stromal tumour) are rare tumours: Only 4–5 people out of 100 000 are diagnosed with STS per year in Europe. Overall, men have a slightly higher risk for STS than women and diagnosis occurs more frequently in patients >55 years, with the mean age at diagnosis being…
Read MoreCopyright / Disclaimer
Legal Disclaimer: The maintainers of this website have no medical qualifications and the information contained on this site is not intended to replace expert medical advice that you may be given. We do our best to ensure that any information we publish is accurate and strongly advise that any decisions about your treatment should be…
Read MoreScientific Board
Sarcoma Patients EuroNet established a Scientific Board with a high level of scientific expertise with the following objectives: Support SPAEN in: gaining legitimacy within the European and International community of experts involved in Sarcoma, GIST and desmoïd tumours; ensuring patient representation and integration in major scientific committees and groups of experts at a national and…
Read MoreSPAEN Statutes
SPAEN is an international network of soft tissue sarcoma, bone cancer, GIST and desmoid patient advocacy groups. The association is working to support sarcoma research and to improve diagnosis, treatment and care of sarcoma patients in close collaboration with clinical sarcoma experts, scientific researchers, pharmaceutical industry and other stakeholders. SPAEN is registered as an association…
Read MoreSPAEN Policy Paper On “Quality Care in Sarcomas” Now Available
SPAEN Policy Paper on “Quality Care in Sarcomas” This paper has been prepared in response to the growing number of requests for sarcoma patient views on such matters as expert treatment centres, reference centres, rare cancer protocols etc. Our objective with this paper is to give a clear statement of what we expect sarcoma treatment…
Read MoreSporadic desmoid-type fibromatosis: EURACAN/EORTC-STBSG Meeting
June 18, 2018, Milan, Italyby Christina Baumgarten, sos-desmoid Germany On June, 18, 2018 we held our international desmoid meeting in Milan, Istituto Nazionale dei Tumori. It was a fantastic meeting with nearly 40 medical experts and patient advocates from all over the world. After a short welcome introduction from Bernd Kasper and Alessandro Gronchi…
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