NQPC-5 JAPAN BRAIN TUMOR ALLIANCE: ACHIEVEMENTS IN 2021-2022 AND PATIENT VOICE


 Brain tumors are a major shock at diagnosis for patients and families, and their journey is impacted in various and complex ways, not only physically but mentally, financially and socially. The Japan Brain Tumor Alliance is a non-profit organization, established in 2006 to support patients and their families. As our key activity, JBTA offers patient-gathering meetings on the regular basis so that patients and families could openly share their concerns and experience. As JBTA collaborates with healthcare professionals, the up-to-date information is provided to patients and families and their needs are shared to the healthcare professionals. JBTA's achievements in 2021-2022 include the review of clinical guidelines, information-sharing events with the Japan Clinical Oncology Group and a seminar by a certified specialist regarding the social support system in Japan. With the active collaboration with other patient advocate groups, multiple petitions have been submitted to pursue further development of drugs for brain tumors. JBTA is also focusing on to provide the information to community through its website and SNS, including the stories of personal journey described by patients and families.Each of brain tumor patients and families has their own needs. Through the discussion at JBTA's monthly meetings and our online communication, they could express their real voice to the peers. JBTA picks up these issues that patients and families are facing and presents the necessity of working on their unmet needs.