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Cancer research for young people with a rare tumor disease.

Bergisch Gladbach, Germany

Research into rare cancers that particularly affect children, adolescents and young adults. To date, there are neither reliably effective drugs nor gentle therapies for the treatment of these so-called sarcomas.

Dr. Michael Wortmann from SMARCB1 e.V.
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Sarcomas are considered the "forgotten cancer". The malignant tumors of the bones and soft tissue account for only about one percent of all cancers worldwide. As a result, sarcomas receive little attention in science and hardly any money is spent on research. Research approaches often stand side by side in an uncoordinated manner or are not pursued further. A holistic concept is missing. SMARCB1 e.V. has set itself the goal of changing this. 

For one characteristic of "forgotten cancer" is that it accounts for about 15 - 20 percent of all malignant new cases in children, adolescents and young adults. In this case too, young people have no lobby.

There are about 70 subtypes of sarcomas. Modern research has found that a number of them have a common characteristic. In them, SMARCB1 is missing or its function is impaired. This gene suppresses the development of tumors. These sarcomas can therefore today be better defined by the common genetic trait than by the body region in which they occur. This group includes malignant rhabdoid tumors, the synovial sarcoma and the epithelioid sarcoma, to name but a few.

With the perspective of a group of sarcomas that share a common characteristic, SMARCB1 e.V. is pursuing its own path. The recognition of the importance of SMARCB1 puts this gene and its tumors in the focus of activities. SMARCB1 e.V. therefore does not consider research on these sarcomas in isolation, but rather promotes networking. SMARCB1 e.V. supports research projects on this group of tumors ideally and financially and intends to initiate its own research projects in the long term. A prerequisite for this is the acquisition of financial means. 

In order to realize these goals, SMARCB1 e.V. wants to attract actors in the research field and sensitize the public to the importance of the topic. Everyone can follow this path so that sarcomas are no longer the "forgotten cancer".