Vice Chair DSS Board, Chair SPAGN Board
German Sarcoma Foundation (DSS), SPAGN, Germany
Patient Advocate since 2003 - nationally and internationally - for sarcomas (rare cancers).
Excerpt from various engagements as patient representatives:
* Co-founder and vice chair of the board of the non-profit “German Sarcoma Foundation”
an organization in which patients and experts are fighting sarcomas together.
* Since 2009, co-founder and board member of “SPAGN Sarcoma Patient Advocacy Global
Network”, the global umbrella organization of currently 60+ sarcoma, GIST, desmoid patient
groups. Since November 2015, elected chair of the organization.
* Expanded NCT (National Center for Tumor Diseases). Co-creator of the concept “Patients
as Research Partners”. Chairman of the “National Patient Research Council” and Co-initiator/
organiser of PEAK, the first national "Patient Expert Academy for Tumor Diseases".
