Dr. Thierry Lacaze-Masmonteil received his medical degree from the University Paris 5 - René Descartes in 1993 and a PhD in biological sciences at the University Paris 7 - Pierre et Marie Curie in 1995. He completed a fellowship in Neonatology in 1997 and a Master in Epidemiology in 2000. He was appointed professor of Pediatrics at the University Paris 11 in 1997. Thierry moved to Edmonton, Alberta, in 2003 to become the inaugural director of the Women and Children Health Research Institute (WCHRI) in 2006. In 2010, He was recruited as a senior scientist at the Children's Hospital of Eastern Ontario (CHEO) Research Institute and was the scientific director of the Clinical Research Unit at CHEO from 2011 to 2015. From 2016 to 2021, Thierry has been the section head of Neonatology at the Cumming School of Medicine, University of Calgary, and the regional program director of Neonatology at Alberta Health Services. His areas of study include pediatric clinical trials with an emphasis on drugs and innovative methods.

Breanne Stewart (BSc, BScN, RN) provides strategic leadership, oversees operations, and drives collaboration within the RareKids-CAN network. With a focus on shaping RareKids-CAN's direction, Breanne is dedicated to fostering partnerships and ensuring the delivery of high-quality clinical trials and innovative research initiatives for individuals affected by rare diseases. Breanne is deeply passionate about optimizing research processes in Canada to ensure timely and efficient treatment and access to therapies for patients and their families.

Sarah Nikkel is a clinical associate professor in the Department of Medical Genetics at UBC and is the interim Department Head of the Provincial Medical Genetics Program at BC Women’s and Children’s Hospital. She started her clinical training in medical genetics as a medical student at University of Alberta. She has a clinical and research interest in skeletal dysplasias and short stature conditions and has been involved in a number of gene discoveries. She has been active with Little People groups in Canada and is part of the medical advisory board of the Little People of America. 

Gail Ouellette is a cofounding chair and director of the Canadian iRARE Centres, rare disease information and support centres. She has a PhD in molecular genetics (Université de Montréal) and a Master’s degree in genetic counselling (McGill University). She has worked as a researcher in gene discovery for complex diseases and as a genetic counsellor at the Centre hospitalier universitaire de Sherbrooke (CHUS). In 2010, she cofounded the Regroupement québécois des maladies orphelines (RQMO)/Quebec Coalition of Orphan Diseases) and its iRARE Centre. Along with rare disease patient organizations, the RQMO advocated for and obtained a Rare Disease Policy and Action Plan in Quebec. She was co-chair (2024) and is an active member of the Implementation Advisory Group for the National Strategy for Drugs for Rare Diseases (Health Canada). She cofounded the Canadian iRARE Centres in 2024 in partnership with the RQMO and CanPKU+.

Dr. Tania Stafinski is Director of the School of Public Health’s Health Technology and Policy Unit, which she co-founded almost 20 years ago with Dev Menon. The Unit conducts applied health research at the request of provincial and federal ministries of health, quality councils, and other public and private sector health organizations. Tania teaches graduate level courses in policy development and health technology assessment, and is the Academic Advisor for the FHSI program. She has served on several provincial, national, and international advisory committees related to health technology decision-making, pharmaceutical pricing and reimbursement, and patient and citizen involvement in resource allocation decision-making. Previously, she was a research associate at the Institute of Health Economics and the University of Alberta. Tania is co-PI for a multi-year health technology assessment grant from Alberta Health, and is co-investigator of the Pharmaceutical Policy Research Collaboration, funded by CIHR and Health Canada. She is also associate editor of BMC Health Services Research. Tania's research interests include HTA methods, innovative approaches to making value-based health technology and services funding decisions, and the role of social values in priority-setting for healthcare. She holds an MSc in epidemiology and a PhD in health services research, both from the University of Alberta.

Jasmine is one of the coordinators of today's Rare Disease Day. She has been a genetic counsellor in a maternal-fetal medicine clinic for 15 years, supporting families through uncertainty and complex diagnoses with compassion. She is a mother of two, enjoys playing tennis, and is training for her second half marathon. Jasmine also serves as chair of a non-profit board in Edmonton, advocating for impoverished individuals and promoting social justice.

After completing medical school and paediatric training in New Zealand, he moved to the Murdoch Childrens Research Institute/Royal Children’s Hospital in Melbourne where he trained in Clinical Genetics. He then went on to complete a PhD in cell matrix biology at the University of Melbourne. Prior to Edmonton, he worked as a Consultant Clinical Geneticist at the Victorian Clinical Genetics Service in Australia and Queen’s University in Ontario. In 2010, he was recruited to the Hospital for Sick Children in Toronto because of his specialist skills in the human chondrodysplasias. At SickKids, he developed the first Canadian multidisciplinary genodermatosis clinic in collaboration with paediatric dermatologists. He is now the Chair of Medical Genetics at the University of Alberta.

Jocelyn Rogers has a rare form of autosomal recessive retinitis pigmentosa or RP. She is an adult member of Scouts Canada and is a non-practicing lawyer and pharmacy technician. She is currently a student at NorQuest College taking Child & Youth Care. She is learning braille and likes to kayak, cross-country ski, ice skate, camping and being outdoors.

Jason Tetro has been involved in health-related microbiology and immunology for the last 35 years. He has worked in various fields including bloodborne, food and water pathogens; environmental microbiology; disinfection and antisepsis; and emerging pathogens such as Zika virus. In the public, he is better known as The Germ Guy. He has written two books, The Germ Code, which was shortlisted as Science Book of The Year in 2014, and The Germ Files, which spent several weeks on the national bestseller list. He has also co-edited, The Human Microbiome Handbook, which provides an academic perspective on the impact of microbes in human health. He was the host of the Super Awesome Science Show, which explored how science fits into our everyday lives. He currently works as a scientific educator at the University of Alberta.