European GIST, Desmoid and Sarcoma advocacy and support groups have agreed to form the collaborative association Sarcoma Patients EuroNet. SPAEN was officially founded on the 6th of April 2009 in Bad Nauheim/Germany. 11 foundation members initiated the foundation of SPAEN and membership is open to patient groups working with sarcoma patients across Europe. SPAEN is an European association – legally registered under German law. The association has some short term goals and some long term ambitions, and is supporting the growing pressure for better treatment of rare cancers being led by groups such as RARECARE, EURORDIS, ESMO and ECPC.
The organization has already started its work with the aim of extending information services, patient support and advocacy so that patients across the whole of Europe can benefit. Acting in partnership with experts, the healthcare industry and other stakeholders, SPAEN will work to improve treatment and care of GIST, Desmoid and sarcoma patients in Europe through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.
Sarcoma Patients EuroNet e.V./Assoc. is supported by leading “European Sarcoma Experts (Expert Groups)” and the pan-European collaboration of sarcoma specialist researchers and doctors, Conticanet. SPAEN has also initiated a Medical Advisory Board.
The main SPAEN objectives are:
- To identify problems, challenges, access issues and unmet medical needs in sarcomas. To find solutions and improve the situation by collaborating with leading sarcoma experts, researchers, industry and other relevant international stakeholders/ initiatives in an outcome-oriented way.
- Sarcoma patients need timely and accurate diagnosis and need to be treated according to guidelines; ideally as early as possible in multidisciplinary sarcoma expert centres. SPAEN advocates and supports the implementation of these structures and pan-European collaboration between these centres.
- Clinical research, studies and generating evidence/data are essential parts of the process of developing better and innovative treatment solutions. SPAEN aims to be involved as early as possible in clinical trials, to try to improve patient’s access to studies and to support meaningful research – following the specific needs of rare cancer patients.
- Sarcoma patients and their relatives need a strong “European Sarcoma Patient Voice” and strong “National Patient Support Opportunities”. That’s why SPAEN cares for their members – the existing national patient organisations and encourages the creation of new ones.
Prof. Dr. Jean Yes Blay (EORTC President and Director of Conticanet): “Sarcoma Patients EuroNet is a very welcome development. We need to involve patients in clinical trials at the design stage so that the relevance of what we do can be considered at the outset. In addition SPAEN will be valuable helping patients understand what being treated in a clinical trial could mean to them. Together we can complete research more quickly and introduce new treatments faster.”
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