International Fabry Disease Forum Organization Rules　　（Effective as of May 27, 2026）

• 1. Name

  This organization shall be known as the International Fabry Disease Forum.

• 2. Purpose

  The Forum brings together researchers from Europe, the United States, Asia, and Japan to exchange the latest knowledge and future perspectives on Fabry disease, including basic research, diagnosis, treatment, and newborn screening.
  The Forum aims to contribute to the advancement of Fabry disease research and clinical practice in Japan and across Asia.
  Through international collaboration, the Forum seeks to promote improved medical care and social welfare for patients with Fabry disease worldwide.

• 3. Activities

  To fulfill its purpose, the Forum shall undertake the following activities:

  1. Organize an international forum every several years, with the timing determined by the Executive Committee.
  2. Convene the Executive Committee prior to each Forum.

• 4. Officers

  1. The Forum shall have the following officers:
     • Executive Committee Chair (1)
     • Executive Vice-Chair (1)
     • Executive Committee Members (approximately 10–15)
     • Treasurer (1)
     • Auditor (1)
  2. The Executive Committee Chair shall preside over the Committee. Meetings shall be valid with attendance by at least half of the members.

• 5. Membership

  Individuals who support the objectives of the Executive Committee and pay the prescribed membership fee (1,000 yen) shall be recognized as members.

• 6. Executive
  Committee
  Operations

  1. The date and venue of the Forum shall be determined by the Executive Committee.
  2. Operational matters shall be decided by the Executive Committee.
  3. The Forum may be co-hosted with companies that support its mission.

• 7. Secretariat

  The Secretariat of the Forum shall be located at:
  Advanced Medical Research Center, Japan Brain Research Foundation
  255 Furusawa-Tsuko, Kawasaki, Kanagawa 215-0026, Japan
  Tel: 044-322-9991
  Fax: 044-966-0654

• 8. Accounting

  1. The fiscal year shall begin on April 1 and end on March 31 of the following year.
  2. Financial reports shall be presented to the Executive Committee.

• Supplementary
  Provisions

  1. The Forum shall be organized through consultation between the Executive Committee and supporting companies. Official invitations shall clearly state the co-hosting arrangement.
  2. The Secretariat and Executive Committee shall be responsible for the operation of every few years’ Forum.
  3. Amendments to these Organization Rules shall require approval by a majority of the Executive Committee.
  4. These Organization Rules shall take effect on May 27, 2026.

• Officers
  (as of May 27, 2026)

  Executive Committee Chair

  • Yoshikatsu Eto, Director, Advanced Medical Research Center, Southern Tohoku Institute for Neuroscience, Professor Emeritus, Jikei University School of Medicine

  Executive Vice-Chairs

  • Masahisa Kobayashi, Associate Professor, Department of Pediatrics, Jikei University School of Medicine

  Executive Committee Members

  • Toryuki Okuyama (Saitama Medical University, Department of Genomic Medicine / Rare Disease Genomic Medicine Program, Specially Appointed Professor / Juntendo University, Visiting Professor)
  • Kimitoshi Nakamura (Professor, Department of Pediatrics, Kumamoto University)
  • Hiroshi Kobayashi (Professor, Center for Medical Sciences, Chair, Department of Gene Therapy Jikei University School of Medicine)
  • Kenichi Hongo (Professor, Department of Cardiology, Jikei University School of Medicine)
  • Naoki Nakagawa (Professor, Division of Cardiology and Nephrology, Asahikawa Medical University)
  • Norio Sakai (Director, Department of Genetic Medicine, Iseikai International General Hospital)
  • Kazuya Tsuboi (Chief Physician, Hematology/Oncology Division, JR Tokai; Director, Lysosomal Disease Center)
  • Motomichi Kosuga (Director, Department of Clinical Laboratory Medicine, National Center for Child Health and Development)
  • Ohsuke Migita (Director, Department of Clinical Genetics; Director, Clinical Laboratory Center; Professor)
  • Hiroyuki Yamakawa (Senior Lecturer, Department of Cardiology / Preventive Medicine Center, Keio University)
  • Aya Narita (Director, Department of Pediatrics, Iseikai International General Hospital)
  • Kaoru Eto (Associate Professor, Department of Pediatrics, Tokyo Women’s Medical University Adachi Medical Center)
  • Takahiro Tsukimura (Lecturer, Laboratory of Biological Function Analysis, Meiji Pharmaceutical University)
  • Takaaki Sawada (Specially Appointed Lecturer, Department of Pediatrics, Kumamoto University)
  • Sueki Tsunogai (Assistant Professor, Department of Pediatrics, Jikei University School of Medicine)
  • Takeo Iwamoto (Principal Investigator, Advanced Medical Research Center, Southern Tohoku Institute for Neuroscience, Visiting Professor, Jikei University School of Medicine) — Secretariat

  International Members

  • Prof. D.M. Niu (National Yang Ming Chiao Tung University, Taiwan)
  • Prof. Y.H. Chien (National Taiwan University, Taiwan)

  Auditor

  • Koichi Higuchi (Certified Public Accountant)

  Secretariat / Administrative Offices

  International Fabry Disease Forum Secretariat
  Advanced Medical Research Center, Japan Brain Research Foundation
  255 Furusawa-Tsuko, Kawasaki, Kanagawa 215-0026, Japan
  (Contacts: Iwamoto, Hirano)

  Forum Operations Office
  Intergroup Co., Ltd.
  Sumitomo Seimei Akasaka Building 6F
  3-3-3 Akasaka, Minato-ku, Tokyo 107-0052, Japan
  Email: forum-secret@intergroup.co.jp
  Contact: Ms. Izumi