Dr Makoto Suematsu and the Japan Agency for Medical Research and Development (AMED) hosted an IRDiRC Consortium Assembly face-to-face meeting on November 10-11, 2017 in Tokyo, Japan. Over two days, IRDiRC members exchanged on the progresses made by their organizations since the last IRDiRC Conference in Paris, France (February 2017) that contribute towards the Consortium’s Mission, and identified key actions for the Scientific and Constituent Committees to collaboratively and collectively move towards the new IRDiRC Goals for 2017-2027.
Additionally, AMED also organized a colloquium to showcase the strengths and to discuss the challenges faced in rare diseases research in Japan. The session opened with an introduction by the Parliamentary Vice Minister of the Ministry of Health, Labor and Welfare (MLHW), Ms Mizuho Onuma, who reiterated the importance of rare diseases research and its impact in improving patients’ quality of life. A series of presentations by different representatives followed the welcome address: IRDiRC and AMED on their contributions towards rare diseases research and funded activities; MHLW on the initiatives of the Japanese government for intractable and rare diseases; the Pharmaceuticals and Medical Devices Agency (PMDA) on the efforts in rare disease therapeutic development in Japan; and researchers from the Universities of Keio and Nagoya respectively on Japan’s Initiative on Rare and Undiagnosed Diseases (IRUD) and innovative medical device development.
This meeting was an opportunity to welcome IRDiRC new members. In particular, umbrella patient advocacy membership recently expanded with, now, representatives from the USA, Canada, Europe, South Africa, Japan, China, India and Australia. IRDiRC has long recognized the importance of patient voice in its program and activities, and welcomed their valuable input to advance patient-centered rare diseases research. Thanks to in-person as well as teleconference attendance and committed participation of members of the Consortium Assembly, this meeting presented new actions for the Consortium towards its new goals.
photo credit: Japanese Ministry of Health, Labor and Welfare