Collaboration/cooperation with external institutions Summary of IRDiRC activities

The International Rare Diseases Research Consortium (IRDiRC) was established in 2011. A funding research body (governmental (funding) agency, institute, foundation or company) can become an IRDiRC funding member. Each of IRDiRC's funding members invests a minimum of 10 million USD over 5 years in research projects/programs in rare diseases contributing towards IRDiRC objectives. A patient organization representing broad patients' interests for all rare diseases in large area can be a part of IRDiRC. A number of grand challenges are being addressed through collaborative actions to reach IRDiRC goals such as: (1) establishing and providing access to harmonized data and samples, (2) performing the molecular and clinical characterization of rare diseases, (3) boosting translational, preclinical and clinical research, and (4) streamlining ethical and regulatory procedures. The members of IRDiRC are 46 institutions including AMED from 20 countries around the world (as of January 2017).

IRDiRC consists of the Consortium Assembly (formerly the Executive Committee), its highest decision-making body, and three subordinate Constituent Committees (CCs), namely the Funders CC, Companies CC and Patient Advocates CC, as well as three subordinate Scientific Committees (SCs), namely, the Diagnostics SC, Interdisciplinary SC and Therapeutic SC. Moreover, several ad-hoc Task Forces (TFs) are formed for prioritized topics. On July 30, 2015, AMED became the first Japanese member of IRDiRC. Initially, Dr. Shigeki Kuzuhara, Program Director of the Rare/Intractable Disease Project of Japan, participated in the Consortium Assembly as AMED's representative, who was later replaced by Dr. Makoto Suematsu, the president of AMED. AMED representatives also participate in the Diagnostics SC, Interdisciplinary SC and Small Population Clinical Trials TF.

IRDiRC Conferences are organized to widely share global trends in rare diseases. For the 3rd IRDiRC Conference, held in Paris on February 8-9, 2017, AMED was proudly asked to serve as a member of the Conference Planning Committee representing Asian members. Not only has the Agency sent distinguished speakers from Asia to globally share their leading research accomplishments, but it has also been engaged in various activities including the development of the IRDiRC goals over the next decade, which cannot be achieved without international collaboration.