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.

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 as the President 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. 

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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

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.

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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.

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.