Study for Human resource for Orphan Drug Development and Rare Disease (NANBYO) Research in Japan

2014 Fiscal Year Final Research Report

• Project/Area Number: 21730288
• Research Category: Grant-in-Aid for Young Scientists (B)
• Allocation Type: Single-year Grants
• Research Field: Business administration
• Research Institution: The University of Tokyo
• Principal Investigator: NISHIMURA Yukiko 東京大学, 先端科学技術研究センター, 助教 (00361676)
• Research Collaborator: YOSHIZAWA Go 大阪大学, 医学系研究科, 准教授 (19526677) ; TERADA Yoh 特定非営利活動法人知的財産研究推進機構(PRIPTokyo)プロジェクトメンバー, 特定非営利活動法人ASrid ; MASATOSHI Iwasaki 特定非営利活動法人知的財産研究推進機構(PRIPTokyo)プロジェクトメンバー, 特定非営利活動法人ASrid ; KUNIHIRO Nishimura 特定非営利活動法人知的財産研究推進機構(PRIPTokyo)プロジェクトメンバー, 特定非営利活動法人ASrid ; MASASHI Suganuma 一般社団法人こいのぼり, 特定非営利活動法人ASrid ; TARO Inaba 一般社団法人こいのぼり, 特定非営利活動法人ASrid
• Project Period (FY): 2009-04-01 – 2015-03-31
• Keywords: 希少・難治性疾患 / 患者（会・協議会） / 中間機関・組織 / 国際連携 / 研究協力・連携

Outline of Final Research Achievements

This research is focusing to all human recourses / stakeholders related to orphan drug/rare disease (NANBYO) area. The purpose of this research is study for the importance of collaboration and corporation among them and development of concrete way for providing valuable knowledge about this field.
In this research, the team had considered; 1) the survey for NANBYO patients and patient groups in Japan, 2) Study for rare disease situation in the US. The team has also considered; 3) organizing the international conference (International Conference for Rare Disease and Orphan Drugs), 4) organizing workshop for all stakeholders in this field, and 5) establishment Patient Advocacy organizations (for specific disease and for all NANBYO area). Almost of these activities are the first challenges in Japan, and increasing valuable opportunities to connect with/among all stakeholders.

Free Research Field

技術移転・研究成果マネジメント