p a t i e n t  a d v o c a c y

The SARKOMTOUR bicycle tour was established in 2006 in Essen, Germany, to bring together health care professionals and people affected by sarcomas outside the hospital setting for interaction, awareness and commemoration while enjoying a day outside on bikes. Since then, the SARKOMTOUR has continuously grown and organically transformed into the biggest sarcoma awareness event and the largest fundraiser for sarcoma research in Germany with multiple satellite tours, some even internationally.  

Defeating sarcomas – together has for many years been our mission statement, as we do not want to accept that patients still die of sarcomas. Therefore we use the Sarkomtour to leverage joint sarcomas research and to raise awareness for centralization of expert care. To achieve this the SARKOMTOUR also collaborates with the German Sarcoma Foundation (DSS) and the Stiftung Universitätsmedizin Essen. 

Research funding goes into highly visible and “not-so-visible” projects that are typically underfunded but have a crucial, catalytic role for public funding:

The FORTRESS meeting is a unique, highly interactive meeting which is co-organized by the Universities of Leuven and Essen. It fosters translational sarcoma research in young people through close interaction with experts. The GISTT-summit is a “spin-off” from FORTRESS and SASS and hence the SARKOMTOUR supports particularly participation of younger scientists. Other projects which receive support include the labor-intensive generation of novel sarcoma models – which is a prerequisite for experimental work in the field. The majority of sarcoma subtypes still lack useful models and the HUSARC initiative aims to change this. The SARKOMTOUR has supported multiple GIST research projects which have profoundly changed the way we understand kinase inhibitor resistance. 

Germany

"Our mission is to ensure the survival of GIST patients and to assist patients and caregivers in maximizing the quality of their lives.

Our group provides a “virtual home” where GIST patients can find emotional support from their peers and learn more about how to live with GIST."

Canada

The GIST Cancer Research Fund is a U.S. organization comprised of either actual GIST patients or caregivers with family members who currently live with or succumbed to the cancer, on the Board of Directors and managing the organization. GCRF’s foundress, Tania Stutman, proudly celebrates life as a GIST patient and is Chairperson of the fund. All the members of GCRF are literally fighting for their lives. 

The GIST Cancer Research Fund has committed itself to support the GIST Cancer Team of Doctors, Researchers and Nurses who have dedicated their lives to the treatment and cure of this deadly cancer. We have raised, through walks and fundraisers, over $14 million dollars for GIST Cancer Research and every single penny goes to this research. Affiliations with the following hospitals and cancer research centers make it possible to treat and change many GIST patients’ lives.

United States of America

The Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare diseases, through patient-powered research, education and empowerment, and global advocacy efforts. Our vision is to empower a future fueled by data, guiding our journey toward cures for rare diseases.

United States of America