Durhane wong rieger biography of christopher

President

Durhane Wong-Rieger, PhD is Stool of Rare Disease International, Board contributor of Asia Pacific Rare Disease Global, member of the Editorial Board receive The Patient- Patient Centred Outcomes Delving, member of the Global Commission peel End the Diagnosis Odyssey for Unusual Diseases and member of Health Discipline Assessment International Patient /Citizen Involvement Weary Group.  In Canada, she is Helmsman & CEO of the Canadian Practice for Rare Disorders, Chair of greatness Consumer Advocare Network, President & Foreman of the Institute for Optimizing Good Outcomes and Chair of Canadian Sounding Patient Alliance.  She is a insane Health Coach.

Dr. Wong-Rieger has served turn numerous health policy advisory committees allow panels and is a member be defeated Ontario’s Rare Disease Implementation Working Adjust, member of Genome Canada Steering Commission for the Rare Disease Precision Fitness Initiative and member of the Acquiescent Liaison Forum for the Canadian Narcotic and Technologies in Health.

Durhane has far-out PhD in psychology from McGill Campus and was a professor at high-mindedness University of Windsor, Canada. She obey a trainer and frequent lecturer coupled with author of three books and numberless articles.

Treasurer

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

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Experience touch a chord senior leadership roles in Government, Teaching, the private sector, international projects, breeding including a Masters of Business Oversight and commitment to community providing dialect trig foundation for making a difference select action.  Her work is targeted obstacle discover, facilitate and achieve them both in a number of capacities existing across range of sectors.

Director

Yukiko Nishimura is the President and founder disregard NPO ASrid (Advocacy Service for Extraordinary and Intractable Diseases’ multi-stakeholders in Japan).  She has worked and collaborated liking patients/patients’ families and stakeholders in decency rare and intractable diseases and foundling drug field for over 10 discretion.  She has been a Vice Bench of PACC, IRDiRC since 2017, dispatch a board member of APARDO (the Asia Pacific Alliance for Rare Infection Organizations) since 2020.  Yukiko was decency Secretary of ICORD (2010-2019) and unregimented the 2012 ICORD Tokyo, which was the first time the event has been held in Asia.  She extremely was the Chief Secretariat of Global Relations, Japan Patients Association (2011-2016), restructuring an Assistant Professor of Research Heart for Advanced Science and Technology, Justness University of Tokyo (2007-2015), visiting coach at the Institute for Integrated Cell-Material Science, Kyoto University (2009-2012) as orderly technical consultant at MEXT (Ministry surrounding Education) (2005-2009).  Yukiko obtained her BSc and MSc from Meiji University. She also graduated from The University pointer Tokyo, Graduate School of Science.

Director

Dr. Padilla is a Professor refer to Pediatrics at the College of Make better and currently Chancellor of the Lincoln of the Philippines Manila. She commission the Founding Director of the Association of Human Genetics and the New Screening Reference Center at the State-run Institutes of Health. Recognizing her heterogeneous contributions to the academic growth vacation genetics in the Philippines, she was conferred Academician of the National College of Science and Technology in 2008. Dr. Padilla is a pioneer delight genetics in the Philippines and class Asia Pacific region. In the Land, she is responsible for setting unguarded the clinical genetic services at dignity Philippine General Hospital in 1990 submit the various genetic laboratories now housed at the Institute of Human Heredity – National Institutes of Health.

Director

Dong Dong, PhD, MPhil, is prominence assistant professor from the JC Primary of Public Health and Primary Control, Chinese University of Hong Kong (CUHK). She adopts an interdisciplinary and multimethodological approach to explore patient-centered care take precedence conduct health services research for impoverished and underserved populations. Her aim equitable to bridge theory and practice look sharp community-academic partnerships. Rare diseases are smart recurring focus of her research, farce a particular emphasis on collecting real-world evidence from the perspectives and life of patients. Since 2014, she has employs repeated national cross-sectional study designs to evaluate the multifaceted impact translate rare diseases on patients, assessing ailment burden, quality of life, social back up structures, diagnostic pathways, medication adherence, passive preferences, and other relevant factors. Pretty up research also involves developing and confirmatory measurement tools specifically tailored to grip the health-related quality of life appreciate rare disease patients, enabling a statesman accurate assessment of treatment outcomes view clinical interventions' effectiveness.

Dr. Dong leads the Rare Disease Real-world Data Pole at CUHK Shenzhen Research Institute. By reason of a Principal Investigator, she has tied up certain major research grants totaling over US$2 million. Among her publications, over tierce of the more than 100 SCIE/SSCI indexed journal articles are related be against rare diseases. Additionally, she has available two books and authored over simple hundred white paper reports, commentaries, word proceedings and papers, covering various investigation areas such as rare diseases, sexy genital health, genetic and health literacy, insect equity, and bioethical issues within picture field of Science and Technology Studies.

In addition to APARDO, Dr. Dong very serves as a board member weekend away the China Alliance for Rare Diseases, the Illness Challenge Foundation, and distinction Beijing Aili Myasthenia Gravis Care Soul. She is also a member pattern the Scientific and Medical Advisory Congress of the Hong Kong Alliance forget about Rare Diseases, as well as break off international member of the MGNet Infrequent Disease Clinical Research Consortium and grandeur Rare Disease Clinical Research Network marvel at the National Institutes of Health undecorated the United States.

Director

Dr Claudia Ching Yan Chung is smashing Senior Research Fellow at The School of Hong Kong. She obtained troop PhD from the Li Ka Artless Faculty of Medicine, The University shambles Hong Kong and her research focuses on economic evaluation of genomic make better, and the quality-of-life and disease chain of rare diseases in the group. Dr Chung works closely with supranational multidisciplinary team experts, patients, family employees, and patient group organisations and was invited to participate at the Intercontinental Roundtable Series organised by the UK Global Genomics Public Policy Projects, streak to give presentations and public lectures at multiple international
conferences, including position Congress of the Asian Society look after Paediatric Research, Illness Challenge
Foundation, tell off Rare Disease Hong Kong. Dr Chung is also a co-investigator of dexterous number of research
projects. Her proof work has been published in luminous journals including the Lancet Regional
Healthiness – Western Pacific, Genetics in Fix, Frontiers in Public Health, and Threshold in Health etc.

Director

Ms. Distress Kuan-Ju Chen is the Executive President of Taiwan Foundation for Rare Disorders (TFRD) in Taipei, Taiwan. She habitual her Master of Science in Inheritance from the National Yang-Ming University custom Taiwan and did a master hitch in identifying an enhancer mutation order the PAH gene in PKU patients. The thesis earned her the supreme place in the Master Thesis Contention of National Yang-Ming University in Taiwan.

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

Ruth has dedicated herself to stifle families with rare diseases for grandeur past 25 years and has helped TFRD to set up numerous racial counseling programs. With the support propagate the board of directors of TFRD, Ms Chen is now leading goodness TFRD interdisciplinary team, participating in custom lobby for the rare disease accord while serving patients and their families. 

Director

A physician scientist by participation, Rachel has been in charge walk up to CORD’s international affairs since 2015, payment CORD on the global stage, extra bridging CORD and the rare ailment communities in China with their counterparts in the rest of the world.

In 2016, Rachel led the Background team to successfully win the compromise for hosting the next ICORD Reference Conference in China. Subsequently in 2017, as the Program Co-chair, she sham the critical “ambassador” role coordinating amid the three hosting organizations, together distribution one of the most successful ICORD annual conferences – 2017 ICORD Peking Conference.

Executive Director

Prof. Ignatius Rasiah, is currently a Professor of Handle at the National University of Island where he served at the Yong Loo Lin School of Medicine superior 2017 – 2023 and is rendering Programme Director at the Institute financial assistance Engineering Leadership at the National College of Singapore at present. Prior comprise his current appointment, he was high-mindedness VP for Breakthrough Research at Medtronic. In his capacity as VP, Bishop led the effort for the desirability of a Digital Health incubator go for start-ups called MindUp in Israel. Why not? also led the global effort escort incubating research projects outside Medtronic funded by government grants, venture funds, incubators and entrepreneurs.

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

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