28th of February marks Rare Disease Day: Joining together for better care for rare diseases and rare cancers
28th of February marks Rare Disease Day, an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at national levels. SPAEN would like to be a part of the Rare Disease Day momentum by advocating at the European level to improve the lives of people living with rare cancers like sarcomas, GIST, Desmoids or Chordomas.
Launch of the European Cancer Patient’s Bill of Rights: charting a course for equitable care for the European Citizen
Today, which marks World Cancer Day 2014, a unique group of patient advocacy organisations, healthcare leaders and Members of the European Parliament against Cancer (MAC) will come togetherto launch the brandnew European Cancer Patient’s Bill of Rights in the European Parliament in Strasbourg. SPAEN, being one of the ECC Partners, welcomes the launch of the Cancer Patient's Bill of Rights which is the result of over two years of work and widespread engagement led by the European Cancer Concord (ECC) and is a call to action to address the significant disparities that exist for European cancer patients today.
French health authorities restore exeptional reimbursement of trabectedin (Yondelis®) for patients with advanced soft tissue sarcomas
The General Director of the French Health System – has informed the French Sarcoma Patients organization “Info Sarcomes” that the Ministry has just agreed to restore exceptional funding for Trabectedin (Yondelis®) for the treatment of sarcoma patients for whom Pazopanib (Votrient®) is not available.
The GIST Group Switzerland has awarded its scientific prize for the fourth time. This fourth award goes to Prof. Nikolas von Bubnoff, Clinic for Internal Medicine 1, University Clinic Freiburg im Breisgau, Germany. The laudatory speech was given by Dr. Michael Montemurro, Chairman of the Gastrointestinal Cancer Project Group of SAKK and member of the Award Committee of the GIST Group.
SPAEN and GIST Support UK/PAWS GIST host first European Wild-type & Paediatric GIST Consortium Meeting
SPAEN and GIST Support UK /PAWS-GIST recently invited a cross section of 27 European clinical, research and pathology experts and patient representatives from 11 European countries to a meeting in London to build on the work of the Paediatric, Adolescent and Wild Type GIST group (PAWS-GIST) in the UK. Wild Type and Paediatric GIST patients are a rare group of patients with a potentially lethal disease and few treatment options. The only way to address this problem effectively in Europe is to pool all existing expertise and resources, and collaborate across borders.
Sunitinib is an oral multi-targeted tyrosine kinase inhibitor approved for treatment of imatinib-resistant/intolerant GIST in adults. Laboratory studies show that sunitinib has a high in vitro activity against wild-type KIT. This may translate to clinical response in adult GIST patients with wild-type KIT GIST. The majority (85%) of pediatric GIST patients have a wild-type KIT form of GIST.
SPAEN is delighted to provide a comprehensive report of the ASCO 2013 medical highlights in GIST and Sarcomas from Dr Axel Le Cesne, Gustave Roussy Institute, Villejuif (France). Sarcomas and GIST were presented at 5 plenary and parallel sessions. These were rich in terms of innovation and therapeutic concepts, reporting study results that may have an impact on our daily practice, whether in GIST or sarcomas.
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.
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.