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.
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.
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.
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
The pharmaceutical company AB Science SA announced on the 4th 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.
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.
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.
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
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.
- In Refractory GIST, Regorafenib Delays Disease Progression Across All Subgroups
- The Rare Cancer EU Access Index Survey: We need your input from the Sarcoma-Community...
- Updated 2012 ESMO Guidlines for GIST and sarcoma available now!
- Treatment of metastatic and/or unresectable GIST: Bayer has submitted a “New Drug Application (NDA)” to the FDA for Regorafenib.