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.
RITU JAIN (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.
Vice President, APARDO
DURHANE WONG-RIEGER (DR)
Ramaiah Muthyala, Ph.D., Ph.D., M.B.A is Associate Professor in the Department of Experimental Clinical Pharmacology, served as Senior Associate Director for Center for Drug Design and Associate Director for Center for Orphan Drug Research, at the University of Minnesota.
Ramaiah was with pharma industry for 22 years in US and in India, during which he was an Executive Board member of two Indian pharma companies; author of more than 35 peer-reviewed scientific publications, two books, and four book chapters and 12 patents. He contributed to the commercialization of four products for Dow Chemicals, 3M, and Schering Plough.
As founder and first President of the Indian Organization for Rare Diseases, IORD, Ramaiah was responsible for the introduction of an amendment to the Indian Drugs & Cosmetic Act of 1954, to include “Orphan Drugs” (2017). He is also a member of Rare Diseases umbrella organizations (EURODIS, CORD, NORD, NZORD, ICORD, Rare Voices Au and APARDO), and one of the initial members of Rare Diseases International (RDI). He was Treasurer for RDI council (2016), ICORD executive board member (2016-7), also serves as a committee member for establishing “Minnesota State Advisory Council for Rare Diseases,”.
Ramaiah is a Fellow of Royal Society of Chemistry and Honorary Fellow of A.P. Akademi of Sciences -FAPAS. He had received, among other awards, the S.C.Amita Award from Indian Chemical Society, and Life-time-achievement award for work on Rare Disease by Minnesota Asian Indian community.
RAMAIAH MUTHYALA (DR)
Kevin Huang, a rare disease patient himself, graduated from Zhejiang University City College. He is the Founder and President of the Chinese Organization for Rare Disorders (CORD). He was also the one who brought the ‘International Rare Disease Day’ to China. Through his work, rare disease is now widely known in China.
Kevin has also been a champion promoting communications and facilitating collaborations among various rare disease stakeholders. He founded the China Rare Disease Patient Organization Network; and started the China Rare Disease Summit – the most influential rare disease conference in China. He is the pioneer and practitioner and has become an iconic figure in the field of rare disease in China.
In February 2018, Kevin became a member of The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease.
KEVIN HUANG (MR)
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