SPAEN

Welcome to Sarcoma Patients EuroNet

Last Updated on Monday, 28 March 2011 10:27 |

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Sarcoma Patients EuroNet Association (SPAEN), the European Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups, was founded in April 2009 with the aim of extending information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe. Acting in partnership with clinical experts, scientific researchers, industry and other stakeholders SPAEN is working to improve the treatment and care of sarcoma patients in Europe through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.

SPAEN: A Better Future For Patients With A Rare Cancer! Read more about the Network.

10 years Swiss GIST Group

Last Updated on Tuesday, 18 June 2013 10:11 |

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The GIST Group Switzerland is the patient support group for GIST patients in Switzerland. The association collaborates with healthcare professionals, the pharmaceutical research industry and other patient organizations around the world to achieve the best possible for patients affected with GIST. This year’s GIST Meeting on April 19, 2013 was a special event since the meeting also commemorated the 10th anniversary of the GIST Group Switzerland.

Trabectedin disreimbursement in France: Sarcoma patients and physicians seek support

Last Updated on Thursday, 25 April 2013 06:53 |

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With the disreimbursement of Trabectedin in France, sarcoma patients are facing a dramatic situation. From 2008, when the EMA and the French Health authorities approved Trabectedin, to 2012, Trabectedin was reimbursed by the French Social Security. Since the beginning of 2013 this drug is not reimbursed anymore in sarcomas. Subsequently, for French doctors it is not possible anymore to prescribe Trabectedin to sarcoma patients although this drug remains, for the physicians of the French Sarcoma Group and those of the European Society of Medical Oncology (ESMO), the "gold standard" in the treatment of this disease. SPAEN would like to support the French sarcoma patients and physicians in their actions by collecting supportive signatures from other sarcoma SPAEN member organizations and sarcoma patients.

FDA approves Stivarga for advanced gastrointestinal stromal tumors

Last Updated on Tuesday, 26 February 2013 11:35 |

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At 25th of Feb. 2013 the U.S. Food and Drug Administration expanded the approved use of Bayer Pharmaceutical's drug Stivarga (regorafenib) to treat patients with advanced gastrointestinal stromal tumors (GIST) that cannot be surgically removed and no longer respond to other FDA-approved treatments for this disease. Stivarga was approved in September 2012 to treat colorectal cancer.

EMA will review a marketing authorization application for Masitinib in the treatment of Imatinib resistant GIST

Last Updated on Sunday, 07 October 2012 20:57 |

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The pharmaceutical company AB Science SA announced on the 4^th of October 2012 that the European Medicines Agency (EMA) has accepted for review a Marketing Authorization Application (MAA) for Masitinib in the treatment of patients with Imatinib-(Glivec®)-resistant GIST.

USA: Initiation of phase II trial of Ponatinib in patients with GIST

Last Updated on Tuesday, 18 June 2013 08:31 |

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ARIAD Pharmaceuticals just announced the initiation of the Phase II trial of Ponatinib (brand name = Iclusig®) in adult patients with metastatic and/or unresectable gastrointestinal stromal tumours (GIST). The trial is designed to provide initial clinical data evaluating the efficacy and safety of Ponatinib in patients with GIST following failure of prior tyrosine kinase inhibitor (TKI) therapy.

“My GIST Companion” - app to support adherence in GIST patients

Last Updated on Thursday, 14 March 2013 20:58 |

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The application “My GIST Companion” is designed to help drive adherence in GIST patients and is now available on iTunes (for iPhone and iPAD). The myGIST Companion app is an interactive digital tool for GIST patients and has been designed with feedback from GIST patient advocates from European Countries. The application allows patients to quickly record their treatment, disease progression, adverse events, and adherence to their therapy.

Bristish Sarcoma Group Meeting, 27.2. - 1.3. 2013

Last Updated on Tuesday, 19 February 2013 10:00 |

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The British Sarcoma Group annual conference in 2013 is being programmed by members of the East Midlands Sarcoma Specialist MDT chaired by Mr Rob Ashford. The Conference starts with a patient advocacy day supported by the three main charities, Sarcoma UK, the Bone Cancer Research Trust and GIST Support UK. Nurses and other clinicians are invited to join the patients from lunch-time for a number of focussed workshops addressing key issues of the day selected by both the charities and the BSG. Read more

Genetic Risk Factor for Chordoma Identified

Last Updated on Tuesday, 16 October 2012 08:53 |

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For the first time ever, scientists have identified a specific genetic risk factor that, when present, significantly increases the chances that an individual will develop chordoma. This discovery – a milestone outcome of the Chordoma Foundation’s significant investment in the Chordoma Genome Project over the past three years – provides unprecedented insight into how chordoma forms, and potentially how to effectively treat it.

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