DURHANE WONG-RIEGER (DR)
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.
RITU JAIN (DR)
As the President of the Asia Pacific Alliance of Rare Disease Organsiations (APARDO), Ritu is committed to strengthening and extending the rare disease network in the Asian regions and ensuring that rare diseases remain a priority in their national health care plans.
Ritu is a founder and current President of Dystropic Epidermolysis Bullosa Research Association (DEBRA) Singapore, the Epidermolysis Bullosa (EB) patient advocacy and support organization that she helped establish in 2015. She also serves on the Board of DEBRA International and as Regional Ambassador for EB Without Borders – a DEBRA International workstream, and on the councils of advocacy organisations such as Rare Diseases International (RDI) and the International Rare Diseases Research Consortium (IRDiRC). In the latter two organisations, she has actively contributed to drafting strategy plans, worked towards organisational objectives, and worked towards deeper engagement of patients and patient communities.
In her various roles, Ritu focuses on empowering patients and families, organising local and regional conferences for capacity building and improved delivery of care, and advocating for policy changes. She is also invested in fostering collaboration of local and international clinicians/researchers as well as pharmaceutical organisations, for enhanced research initiatives and clinical trials for improvement in the quality of lives of individuals living with rare diseases. Ritu’s familiarity with the culture, conditions, and challenges of those with rare diseases in Asia makes her a suitable voice within global rare diseases organisations.
Beyond these volunteer roles, Ritu is a sociolinguist and teaches graduate and under-graduate students at a local university. A PhD, Ritu’s research interest is in Language Policy and its impact on immigrant minorities in multilingual sites.
Lisa holds a BSc (Hons) degree in biomedical science, with experience as a research scientist in the field of genetics. Lisa also holds a Diploma in Anatomy, Physiology and Massage along with a Certificate in Psychology and a Diploma in Herbal Studies. She has worked in the New Zealand health industry for over 12 years. The range of her experience covers assessing and facilitating care packages for older people, employment and education support in the mental health area and leading a team offering crisis respite for youth. Lisa was also part of the Be Leadership graduates in 2014. Lisa joined Rare Disorders NZ in 2017 and is wholeheartedly committed to advocating and supporting strategic level change for people with rare disorders
KIN PING TSANG
Kin Ping Tsang, a retired business executive with Retinitis Pigmentosa, has been actively volunteering for patients’ groups for some decades, both in Hong Kong and internationally. In March 1995, along with fellow patients, he founded Retina Hong Kong, a self-help organisation for patients with retinal degenerative diseases; he has been the association’s serving President since then.
Kin Ping is also President of the Rare Disease Hong Kong (formerly Hong Kong Alliance for Rare Diseases [HKARD] founded in December 2014), the Vice-Chair of Hong Kong Patients’ Voices (an advocacy platform in the healthcare sector), and he has been serving on the management committee of Retina International since 2000.
In 2008, he was elected to the Governing Board of the International Alliance of Patients’ Organizations (IAPO) and was the Chair from August 2013 to July 2015. Kin Ping was elected to the Council of Rare
Diseases International (RDI) and the Asia Pacific Association of Rare Disease Organizations (APARDO) in 2017 and 2019, respectively.
Whilst with IAPO, he has been involved in the planning and organisation of their regional patient workshops in Africa, Latin America and Asia, and the Global Patients Congresses. His main advocating areas are access to treatment, patient safety, drug safety, medical ethics and patient engagement in the healthcare sector.
Additionally, Kin Ping is Vice-Chair of the Hong Kong Guide Dogs Association and an Honorary Fellow of the Hong Kong Academy of Pharmacy. He is Vice-Chair of the Hong Kong Joint Council for People with Disabilities.
EILEEN YANGYANG LI
Eileen has more than 8 years' experience in the healthcare market and rare disease area and has been well recognized as a rare disease expert in China. She joined Chinese Organization for Rare Disorders (CORD) as a senior consultant in 2015 and has been working closely with CORD in rare disease policy advocacy activities in China. In February 2019, Eileen led the publication of (2019 China Rare Disease Drug Accessibility) as the project director.
Eileen is also the principal of IQVIA management consulting group in China. In the past years, she has supported several specialty drugs’ launch in China, with a special focus on rare disease drugs and oncology drugs. She has accumulated rich experience in the registration & approval, pricing, reimbursement access, and the go-to-market model of rare disease drugs.
Prior to IQVIA, Eileen worked with Novartis US. HE&OR team. Eileen has obtained her M.S. degree in Social Policy from Columbia University; and B.S. in Business Administration from Renmin (People’s) University of China.
SHUAN-PEI LIN (DR)
Dr. Shuan-Pei Lin is currently Professor of Pediatrics and Human Genetics at MackayMedical College, and Senior Attending Physician at the Division of Genetics and Metabolism, Department of Pediatrics, and Director of Rare Disease Center and Biochemical Genetics Laboratory, Department of Medical Research at Mackay
Memorial Hospital, Taipei, Taiwan.
Dr. Lin has firmly believed that rare diseases need not only passive treatment, but also active prevention. In 1986, he received clinical fellowship training in the Genetics Section of the Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan, before completing another clinical fellowship at the Department of Human Genetics at Yale University School of Medicine, USA.
Besides his academic appointments, Dr. Lin is also President of the Taiwan Human Genetics Society and Taiwan Foundation of Rare Disorders, Honorary President of the Taiwan MPS Society, committee member in several review committees for rare disease issues in the Department of Health Promotion and Ministry of Health and
Welfares, and Board Director of the Republic of China (ROC) Down Syndrome Foundation and Taiwan PWS Association.
For his contributions in the field of genetic disorders, Dr. Lin has received numerous honors, including the Special Contribution Award from the International Prader-Willi Syndrome Organisation in 2010, and the Medical Dedication Award in 2019.
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.