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.  

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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.

Dr. Padilla is a Professor of Pediatrics at the College of Medicine and currently Chancellor of the University of the Philippines Manila. She is the Founding Director of the Institute of Human Genetics and the Newborn Screening Reference Center at the National Institutes of Health. Recognizing her varied contributions to the academic growth of genetics in the Philippines, she was conferred Academician of the National Academy of Science and Technology in 2008. Dr. Padilla is a pioneer in genetics in the Philippines and the Asia Pacific region. In the Philippines, she is responsible for setting up the clinical genetic services at the Philippine General Hospital in 1990 and the various genetic laboratories now housed at the Institute of Human Genetics – National Institutes of Health.

Dong Dong, PhD, MPhil, is an assistant professor from the JC School of Public Health and Primary Care, Chinese University of Hong Kong (CUHK). She adopts an interdisciplinary and multimethodological approach to explore patient-centered care and conduct health services research for underprivileged and underserved populations. Her aim is to bridge theory and practice through community-academic partnerships. Rare diseases are a recurring focus of her research, with a particular emphasis on collecting real-world evidence from the perspectives and experiences of patients. Since 2014, she has employs repeated national cross-sectional study designs to evaluate the multifaceted impact of rare diseases on patients, assessing disease burden, quality of life, social support structures, diagnostic pathways, medication adherence, patient preferences, and other relevant factors. Her research also involves developing and validating measurement tools specifically tailored to capture the health-related quality of life of rare disease patients, enabling a more accurate assessment of treatment outcomes and clinical interventions' effectiveness.

Dr. Dong leads the Rare Disease Real-world Data Lab at CUHK Shenzhen Research Institute. As a Principal Investigator, she has secured major research grants totaling over US$2 million. Among her publications, over one-third of the more than 100 SCIE/SSCI indexed journal articles are related to rare diseases. Additionally, she has published two books and authored over a hundred white paper reports, commentaries, conference proceedings and papers, covering various research areas such as rare diseases, reproductive health, genetic and health literacy, health equity, and bioethical issues within the field of Science and Technology Studies.

In addition to APARDO, Dr. Dong also serves as a board member of the China Alliance for Rare Diseases, the Illness Challenge Foundation, and the Beijing Aili Myasthenia Gravis Care Center. She is also a member of the Scientific and Medical Advisory Committee of the Hong Kong Alliance of Rare Diseases, as well as an international member of the MGNet Rare Disease Clinical Research Consortium and the Rare Disease Clinical Research Network of the National Institutes of Health in the United States.

Dr Claudia Ching Yan Chung is a Senior Research Fellow at The University of Hong Kong. She obtained her PhD from the Li Ka Shing Faculty of Medicine, The University of Hong Kong and her research focuses on economic evaluation of genomic medicine, and the quality-of-life and disease burden of rare diseases in the community. Dr Chung works closely with international multidisciplinary team experts, patients, family members, and patient group organisations and was invited to participate at the International Roundtable Series organised by the UK Global Genomics Public Policy Projects, and to give presentations and public lectures at multiple international
conferences, including the Congress of the Asian Society for Paediatric Research, Illness Challenge
Foundation, and Rare Disease Hong Kong. Dr Chung is also a co-investigator of a number of research
projects. Her research work has been published in leading journals including the Lancet Regional
Health – Western Pacific, Genetics in Medicine, Frontiers in Public Health, and Value in Health etc.

Ms. Ruth Kuan-Ju Chen is the Executive Director of Taiwan Foundation for Rare Disorders (TFRD) in Taipei, Taiwan. She received her Master of Science in Genetics from the National Yang-Ming University of Taiwan and did a master thesis in identifying an enhancer mutation of the PAH gene in PKU patients. The thesis earned her the first place in the Master Thesis Competition of National Yang-Ming University in Taiwan.

Since graduation, Ruth joined TFRD and has committed to direct patient support and counselling services. She had participated in training program for genetic counseling and completed a short-term study at the Duke University Medical Center. In 2009, Ms Chen was certified as a Genetic Counselor by Taiwan Human Genetics Society.

Ruth has dedicated herself to serve families with rare diseases for the past 25 years and has helped TFRD to set up numerous genetic counseling programs. With the support from the board of directors of TFRD, Ms Chen is now leading the TFRD interdisciplinary team, participating in policy lobby for the rare disease community while serving patients and their families. 

A physician scientist by training, Rachel has been in charge of CORD’s international affairs since 2015, representing CORD on the global stage, and bridging CORD and the rare disease communities in China with their counterparts in the rest of the world.

In 2016, Rachel led the CORD team to successfully win the bid for hosting the next ICORD Annual Conference in China. Subsequently in 2017, as the Program Co-chair, she played the critical “ambassador” role coordinating among the three hosting organizations, together delivering one of the most successful ICORD annual conferences – 2017 ICORD Beijing Conference.

Prof. Ignatius Rasiah, is currently a Professor of Practice at the National University of Singapore where he served at the Yong Loo Lin School of Medicine from 2017 – 2023 and is the Programme Director at the Institute for Engineering Leadership at the National University of Singapore at present. Prior to his current appointment, he was the VP for Breakthrough Research at Medtronic. In his capacity as VP, Ignatius led the effort for the launch of a Digital Health incubator for start-ups called MindUp in Israel. He also led the global effort in incubating research projects outside Medtronic funded by government grants, venture funds, incubators and entrepreneurs.

Prof Rasiah, who has more than 20 years’ experience in R&D management and product development in industry, received his PhD in Physics in 1992 and continued onto his postdoctoral fellowship at the Lash Miller Labs in the
University of Toronto in Canada. He was the CTO for Asia at PerkinElmer Optoelectronics from 2004 to 2007 and the Global Technology Manager at Honeywell Electronic Materials until 2003. Prof. Rasiah is a member of the American Physical Society (APS), the Photonics Society of IEEE and was an Adjunct Professor at the University of Galway in Ireland.