Johannes joined CLL Advocates Network´s Steering Committee in October 2023. He lives in Germany and was diagnosed with CLL in 2020. While on Watch & Wait the disease progressed quickly. In 2022 he started treatment within a clinical trial. After one year his CLL was MRD negative and he is since back on Watch & Wait.
After having been active in various management positions in global IT companies for 35 years, Johannes´ patient advocacy career started shortly after having been diagnosed. He serves as member of the Patient Advisory Council of the German Cancer Research Center (DKFZ), member of the Working Group for Development of National Strategy for Gene and Cell-based Therapies, Patient Advisor for Clinical Trial Development and a variety of other patient focused initiatives. Johannes is also a strong supporter of secondary use of patient data for cancer research in the context of the European Health Data Space (EHDS). This is a topic very close to his heart since – provided it is done right – it will accelerate access to new, more powerful therapies.
Johannes has significantly contributed to numerous CLLAN activities such as ICBCC, CLLAN Advocacy Toolkit, etc. in the past and has represented CLLAN at conferences, Advisory Boards and training courses. We are proud that Johannes has accepted our offer to join the CLLAN Steering Committee and look forward to benefitting from his vast knowledge, professionalism, dedication and proactiveness in our joint aim of further developing the network.