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 is collaborating in the EuroEwing project that involves 20 European partners in Europe. Ewing Sarcomas (ES) are rare bone cancers affecting young people in particular. The goal of the EuroEwing project is to improve the treatment outcomes for patients through a new and unique level of European collaboration, involving the most active clinicians and scientists in Europe dedicated to improving survival from Ewing Sarcoma. SPAEN's aim at the moment is to identify all bone sarcoma patient organisations that work in Europe and to create an online database mapping the patient organizations collected. The database aims at providing all sufferers of bone sarcoma with an accessible and centralized tool for locating support and information.
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.
SPAEN is co-organizing an EORTC training course for patient advocates on "Understanding Cancer Clinical Research" which will be held from 28 Feb - 1 March 2014 in Brussels at the EORTC headquater. This is a unique course with an interesting programme and good speakers to educate patient advocates about how medicines RD works. For more information please see here.
The 5th SPAEN Annual Conference will be held from 13 to 15 November in Amsterdam/Netherlands. To see what is going to happen during the conference, please see the SPAEN Conference 2013 report which is available now! 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.
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.