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The Team




Durhane Wong-Rieger, PhD is Chair of Rare Disease International, Board member of Asia Pacific Rare Disease International, member of the Editorial Board of The Patient- Patient Centred Outcomes Research, member of the Global Commission to End the Diagnosis Odyssey for Rare Diseases and member of Health Technology Assessment International Patient /Citizen Involvement Interest Group.  In Canada, she is President & CEO of the Canadian Organization for Rare Disorders, Chair of the Consumer Advocare Network, President & CEO of the Institute for Optimizing Health Outcomes and Chair of Canadian Heart Patient Alliance.  She is a certified Health Coach.


Dr. Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of Ontario’s Rare Disease Implementation Working Group, member of Genome Canada Steering Committee for the Rare Disease Precision Health Initiative and member of the Patient Liaison Forum for the Canadian Drugs and Technologies in Health.


Durhane has a PhD in psychology from McGill University and was a professor at the University of Windsor, Canada. She is a trainer and frequent lecturer and author of three books and many articles.




Monica Ferrie is the Chief Executive of Genetic Support Network of Victoria (GSNV), an organisation driven by vision of a world where everyone can flourish.  She is also the Director of Bold and Brave Consulting and Toilet Training Educators, a Small Business Mentor, Treasurer of the Balibo House Trust and Honorary Fellow of the University of Melbourne.  

Experience in senior leadership roles in Government, Education, the private sector, international projects, education including a Masters of Business Administration and commitment to community providing a foundation for making a difference through action.  Her work is targeted to discover, facilitate and achieve them both in a number of capacities and across range of sectors.




Yukiko Nishimura is the President and founder of NPO ASrid (Advocacy Service for Rare and Intractable Diseases’ multi-stakeholders in Japan).  She has worked and collaborated with patients/patients’ families and stakeholders in the rare and intractable diseases and orphan drug field for over 10 years.  She has been a Vice Chair of PACC, IRDiRC since 2017, and a board member of APARDO (the Asia Pacific Alliance for Rare Disease Organizations) since 2020.  Yukiko was the Secretary of ICORD (2010-2019) and organized the 2012 ICORD Tokyo, which was the first time the event has been held in Asia.  She also was the Chief Secretariat of International Relations, Japan Patients Association (2011-2016), as an Assistant Professor of Research Center for Advanced Science and Technology, The University of Tokyo (2007-2015), visiting lecturer at the Institute for Integrated Cell-Material Science, Kyoto University (2009-2012) as a technical consultant at MEXT (Ministry of Education) (2005-2009).  Yukiko obtained her BSc and MSc from Meiji University. She also graduated from The University of Tokyo, Graduate School of Science.

Help us make a greater impact across the Asia Pacific region.


If you have any questions or would like more information about rare disease in Asia Pacific, our advocates around the region will be happy to help.

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Phone:  (65) 9385 5053

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