The Forgotten Cancer - European Patient Group Formed

Main Category: Cancer / Oncology
Article Date: 16 Nov 2008 - 0:00 PST

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European advocacy and support groups working with patients who have some of the rarest cancers have agreed to form a collaborative association.

Sarcoma Patients EuroNet (SPAEN) will start work in January 2009 with the aim of extending information services, patient support and advocacy so that patients across the whole of Europe can benefit. Five leading patient groups in Germany, France and the UK are the founding members of SPAEN, and membership of the association is open to patient groups anywhere in Europe who work with sarcoma patients.

In many European countries sarcoma is a 'forgotten cancer'. There is little understanding in the healthcare system of the patient benefit that specialist treatment centres offer or of the better patient outcomes which come from doctors who regularly treat these rare cancers. Many patients get no access to information about their disease or their treatments, and without access to the internet knowledge of new treatments is hard to come by.

Sarcomas are very rare. They account for about 1% of all cancers diagnosed, but there are about 50 different sub-types, and these tumours can appear almost anywhere on or in the body. SPAEN will organise training to help patient groups understand sarcoma, and advise patients wishing to create new advocacy groups. The members will share their resources (leaflets, information, books etc) and develop new material for patients under the SPAEN banner.

SPAEN is being supported by the pan-European collaboration of sarcoma specialist researchers and doctors, Conticanet. The two associations will work together to ensure that information on clinical trials is widely promoted and accessible to patients. Through Conticanet it is also planned that patients will have an voice in future clinical trial development.

The founding members are:

Sarcoma UK - www.sarcoma-uk.org
GIST Support UK - www.gistsupportuk.com
Das Lebenshaus - www.daslebenshaus.org
SOS Desmoid - www.sos-desmoid.de
Ensemble Contre Le GIST - www.ensemblecontrelegist.org

The new association will be based in Bad Nauheim, Germany with its administration provided by Das Lebenshaus.

More information can be downloaded from www.sarcoma-uk.org/docs/spaen.pdf