ABSTRACT
Brain tumors are a major shock at diagnosis for patients and their families, and the journey is hectic, impacted in various and complex ways, including acute and chronic episodes. The Japan Brain Tumor Alliance is a non-profit organisation, established in 2006 to support patients and their families. As our key activity, JBTA offers nation-wide patient support through patient-gathering meetings with and without health care professionals to openly share needs, issues and concerns, partly summarized and shared in the scientific field (Gatellier, 2021, OT Journal, vol 55 no.3, 257–259;Gatellier, 2021, MASCC Annual Meeting). JBTA actively collaborates with the International Brain Tumor Alliance, with recent outcome of an international survey featuring the brain-tumor patient and caregiver experience during COVID-19 pandemic (Voisin et al., 2020, Neuro-oncology advances, 2(1), vdaa104). As part of collaboration with healthcare professionals in 2020–21, JBTA achievements include the review of clinical guidelines (as part of Patient and Public Involvement activity), information-sharing events with the Japan Clinical Oncology Group and the seminar with a group including occupational therapists. In addition, to highlight patients’ needs and priorities to the neuro-oncology community, since March 2020, JBTA shares the Japanese translation of the monthly IBTA e-newsletter broadcasting the latest and most relevant scientific, community information and brain tumor-related events around the world to healthcare professionals and brain tumor patients and families in Japan. These enlightening events place JBTA in an ideal position to lead research in the direction most meaningful to brain tumor patients.