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Together We Can Make A Difference
For Those Affected By Sarcomas!

Our Work

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Sarcoma Patients EuroNet (SPAEN), the International Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups was founded in April 2009. The organisation was born from a very strong desire among various national patient groups to network, cooperate and share materials, knowledge and experiences. Acting in partnership with clinical sarcoma experts, scientific researchers, pharmaceutical industry and other stakeholders, SPAEN is working to support sarcoma research and to improve the diagnosis, treatment and care of sarcoma patients through improving information and support and by increasing the visibility of sarcoma with policymakers and the public.

SPAEN is an international association, legally registered under German law. The network of currently 41 patient groups collaborates closely with international societies, networks or organisations such as ESMO, EORTC, EMSOS, CTOS, SARC, World Sarcoma Network, EMA or Rare Cancers Europe. SPAEN also seeks exchange and close collaboration with currently 20 international cancer patient advocacy networks representing other cancer diagnoses.

Sarcoma Research Patient Group

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Research in sarcomas needs to become more patient-centric!

We feel that research decision making sometimes depend on other reasons than actual needs and most important questions for patients.Therefore, we would like to work towards developing a strategy and clear direction to ultimately improve outcomes for sarcoma patients – in a collaborative effort of patient advocates, patients, carers and sarcoma experts.

 We have therefore created a patient-led research group, which consists of currently 10 patient and patient representatives.


The Sarcoma Research Priorities Paper

As a first step, we want to define the top 10-20 most important questions for sarcoma research - and thus set the right priorities in sarcoma research for patients.

We've therefore created a questionnaire for anyone to answer who's been touched by sarcoma - patients, carers, family members, friends of sarcoma patients, but also healthcare professionals (doctors, researchers, nurses etc).

So, if you ever had a question about the diagnosis, treatment, survivorship or end-of-life care of sarcoma and have not been able to find out the answer,
of if there any aspects of sarcoma which you feel should be addressed by research, then please take part in this survey.

It is available in different languages: