Meet the Executive Committee
The Network Executive Committee is responsible for overseeing the scientific, regulatory, ethics and legal compliance of the activities conducted by the network.
Dr. Geneviève Bernard
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Dr. Geneviève Bernard is a clinician-scientist at the McGill University Health Centre (MUHC) Research Institute and an Associate Professor, Department of Neurology and Neurosurgery, at the Faculty of Medicine and Health Sciences at McGill University. She leads an internationally recognized cohesive and comprehensive translational research program on leukodystrophies, rare pediatric neurodegenerative diseases.
Dr. Craig Campbell
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Dr. Craig Campbell is a Professor of Pediatrics, Clinical Neurological Sciences and Epidemiology, at Western University. He is the Chair of Pediatrics, the Head of the Division of Pediatric Neurology, and the medical director of the multidisciplinary neuromuscular clinic based at Thames Valley Children’s Centre and the Pediatric Neurophysiology Laboratory at Children’s Hospital London Health Sciences Centre. He is involved in many academic and industry-initiated clinical trials in pediatric neuromuscular disease.
Tomasz Czarny (Ex Officio)
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Tomasz Czarny (Ex Officio) is the Executive Director, Precision Child Health and Clinical Research Transformation initiatives at the Hospital for Sick Children (SickKids), and is the co-director for the Precision Child Health Partnership between SickKids (Toronto) and CHU Sainte-Justine (Montreal).
Dr. Sarah Dyack
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Dr. Sarah Dyack is an Associate Professor in Pediatrics and Medicine at Dalhousie University. As a medical geneticist, she practices in the areas of clinical and biochemical genetics. Her research is focused on rare disease gene discovery, biochemical genetics and newborn screening, and implementation of research into clinical care. She is a member of the Canadian Fabry Disease Initiative, a national clinical trial for Fabry disease, and she is a co-principal investigator of a GAPP grant funded by Genome Canada.
Dr. Elie Haddad
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Dr. Elie Haddad is a Professor of Pediatrics at the Faculty of Medicine, University of Montreal where he performs basic and clinical research focusing on immune disorders, rare diseases and immunotherapies. Based at the CHU Sainte-Justine in Montreal, he is the head of Immunology and Rheumatology Division. He is the co-Chair of the Precision Child Health Partnership (Sainte-Justine – SickKids). He is the current President of the Clinical Immunology Society and one of the 3 multi-PIs of the primary Immune Deficiency Treatment Consortium, which is one of the NIH-funded Rare Disease Clinical Research Network.
Dr. Alexandra King
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Dr. Alexandra King is an Associate Professor at the University of Saskatchewan (USask) and is a citizen of Nipissing First Nation. She is the Cameco Chair in Indigenous Health and Wellness at USask, co-lead of Pewaseskwan (the Indigenous Wellness Research Group) and an Internist with the Saskatchewan Health Authority. She supports Indigenous communities in improving health and wellness outcomes, bringing leadership in culturally safe and responsive health research and care. She serves on many initiatives including the Canadian Association for HIV Research, the Canadian Network on Hepatitis C, the CIHR Institute of Circulatory and Respiratory Health Advisory Board and Mitewekan (Cree, meaning ‘the spirit behind the heartbeat’), which is the lead Indigenous partner of the Cardiovascular Network of Canada. She is a Sex and Gender Champion at USask, with recognized expertise in gender and Indigenous people in Canada.
Dr. Thierry Lacaze-Masmonteil (Ex Officio)
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Dr. Thierry Lacaze-Masmonteil (Ex Officio) is the RareKids-CAN Nominated Principal Investigator and the Scientific Director of MICYRN since 2018 and Clinical Professor of Pediatrics at the University of Calgary (UC). He is also the inaugural Scientific Director of the Women and Children Health Research Institute (WCHRI, U of A) from 2006 to 2010, and Scientific Director of the Clinical Research Unit at the Children's Hospital of Eastern Ontario (CHEO) from 2011 to 2015. Under his tenure, MICYRN has acquired the expertise to function as a de-centralized Academic Research Organization (ARO), a first in Canada for the non-oncology pediatric clinical trial space. MICYRN currently provides ARO services to 15 teams of CIHR-funded investigators. Dr. Lacaze-Masmonteil co-leads the CHEER initiative, funded to streamline and improve research ethics review across Canada.
Dr. Kim McBride
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Dr. Kim McBride is a Professor and Department Head of Medical Genetics at the University of Calgary, having recently moved from Nationwide Children’s Hospital in Columbus Ohio, USA. He is a clinical and medical geneticist with over 20 years' experience in clinical trials from pre-clinical, IND submission through phase 1, 2, and 3 trials for a variety of rare disorders such as PKU, Sanfilippo syndrome, muscular dystrophy (and others) using enzyme replacement, small molecules and most recently, gene transfer.
Sara Ethier
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Sara Ethier serves as a board member with CORD (Canadian Organization for Rare Disorders) working to provide a common voice and strategy for all those patients and families impacted by rare disorders. She began her rare disease advocacy efforts after her child was diagnosed with a systemic autoinflammatory disease (SAID). Sara is a communication and liberal arts instructor at the Southern Alberta Institute of Technology. She serves as a board member with the Canadian Autoinflammatory Network and has volunteered with Cassie+Friends as a patient advocate.
Breanne Stewart (Ex Officio)
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Breanne Stewart (Ex Officio) (BSc, BScN, RN) serves as the Network Director for RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network- she provides strategic leadership, oversees operations, and drives collaboration within the 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. Having joined MICYRN in 2018 as the inaugural Associate Director of Clinical Trials, 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.
Dr. Stuart Turvey
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Dr. Stuart Turvey is a Professor of Pediatrics at The University of British Columbia (BC) and a pediatrician based at BC Children’s Hospital where he cares for children with often life-threatening immune system disorders. He holds both the Tier 1 Canada Research Chair in Pediatric Precision Health and the Aubrey J. Tingle Professorship in Pediatric Immunology. He is now a highly effective leader of the Precision Health Initiative at BC Children’s Hospital and UBC.
Dr. Leanne Ward
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Dr. Leanne Ward is a Professor of Pediatrics in the Faculty of Medicine at the University of Ottawa (UO) where she holds a Tier 1 Research Chair in Pediatric Bone Disorders. She is the Scientific RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network 6 Director of The Ottawa Pediatric Bone Health Research Group, The Medical Director of the Pediatric Osteology Clinic at CHEO, and a pediatric endocrinologist-osteologist in the CHEO Division of Endocrinology and the Founder and Director of the Canadian Alliance for Rare Disorders of the Skeleton (CARDS).
Dr. Ann Yeh
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Dr. Ann Yeh is a Professor of Paediatrics (Neurology) at the University of Toronto, Director of the MS and Neuroinflammatory Disorders Program and Fellowship Program at The Hospital for Sick Children (SickKids), and co-lead for Clinical Trials at the Hospital for Sick Children Research Institute. She leads the clinical research professional educational stream of the CANadian Consortium of Clinical Trial TRAINing Platform (CANTRAIN). Her research program focuses on visual outcomes and therapies for paediatric MS and other demyelinating/neuroinflammatory conditions.