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.
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.
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 SPAEN Annual Conferences 2013 was very well attended with almost 100 participants from more than 20 countries covering patient advocates, medical experts/researchers and the health industry. For the sarcoma patient community the SPAEN conference is a valuable plattform with an opportunity to learn about advances and challenges in the treatment of sarcomas/GIST and to share experience and best practice.
Bayer HealthCare has received approval from the Japanese authorities (MHLW) for the marketing of Regorafenib for the treatment of patients with GIST who have progressed after prior systemic cancer therapy. “The approval of Regorafenib in Japan is an important development as it means that patients with GIST have a new option to slow the progression of this rare but aggressive disease,” said Kemal Malik, MD, Member of the Bayer HealthCare Executive Committee and Head of Global Development. “We are pleased that Regorafenib can make a difference to patients diagnosed with advanced GIST.”
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.
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.
Commemorating the Sarcoma´s National Day, the AEAS (Spanish Association for Sarcoma’s affected) and Mari Paz Jiménez Casado Foundation, have organised the 1st Workshop on early detection of Sarcoma, supported by Novartis and PharmaMar and endorsed by GEPAC and GEIS.
Vivienne Parry OBE, a well known journalist, tells the incredible story of our fight against cancer over the last 50 years. Through the eyes of scientists such as iPRI’s Professor Peter Boyle, researchers and patients, we see how far we have come and how far we have to go. Including contributions from Prof. Robert Weinberg, Prof. Umberto Veronesi, Lord Ara Darzi, Cancer Research UK, David Nathan, Brian Druker and many more. The film is a non-commercial, editorially independent piece of work which has been supported by Cancer Research UK and funded by an educational grant from Roche. The purpose is to educate and inform those who are affected by cancer. Please see the film here