Leadership

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 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) 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 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 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 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) 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 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 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) (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 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 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 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.

Ameen Abdelmajid is a seasoned clinical research professional and pharmacist with extensive experience in regulatory compliance, clinical data management, and medical communication. Based Atlantic Canada, he has worked with renowned organizations such as Sanofi, IQVIA, and Abbott, leading clinical trials and regulatory submissions. With certifications in SAS programming and data visualization, Ameen specializes in designing protocols, statistical analysis plans, and managing large-scale data studies. Ameen is committed to advancing innovation in pediatric rare disorders.

Hello! My name is Daislyn Adedokun. I am the Clinical Navigator at the University of Saskatchewan. My clinical research experiences include patient recruitment, the coordination of study visits, data and sample collection, project office work and other aspects of different studies concerning the prevalence of non- communicable diseases & conditions. My research passions include knowledge translation & education and the development of strategies to prevent or overcome different health conditions or diseases. I am also very passionate about equity, diversity and inclusion in clinical research. In my spare time I love keeping active and trying foods from different cultures!

I am a Clinical Research professional with a strong track record in managing clinical trials across diverse therapeutic areas, including cardiovascular, allergy, dermatology, respiratory, and pediatrics. I’ve worked on all parts of the research process, from creating study plans and recruiting participants to running the studies and managing the data, making sure everything is done safely, efficiently, and according to the protocols and regulatory requirements.

In addition to my role as a Clinical Research Coordinator in the Department of Pediatrics at McMaster University, I’ll be serving as Clinical Trial Navigator for RareKids-CAN, supporting rare disease research and facilitating access to clinical trials for children and their families.

Nawel is a clinical research coordinator at CHU Sainte-Justine since May 2023. She has scientific background with a bachelor’s degree in biochemistry and is currently completing a Master’s degree in drug development, with a specialization in Canadian regulations. She mainly manages study visits and regulatory filing. She trains new employees on electronic ethics’ committee submission. She is very happy and excited to start this new challenge with MICYRN and to share her knowledge and competencies!

Nina is a Clinical Research Coordinator at BC Children’s Hospital who has supported clinical research across various departments, including investigator-initiated and industry-sponsored studies. Through RareKids-CAN, Nina is passionate about increasing awareness of research opportunities for children and families living with rare diseases. She is also passionate about connecting researchers, clinicians, children and families to help make research opportunities more accessible.

Coming soon!

Davy is an experienced Clinical Research Professional with over 15 years of experience. Since April 2022, she has managed the Pediatric Clinical Research Unit (PCRU) at CHU de Québec-Université Laval Research Center (CRCHU) where she oversees daily operations and ensures adherence to both local and international regulations. Her key responsibilities include managing feasibility assessments, coordinating start-up activities, and leading budget negotiations with sponsors and CROs. Since April 2024, Davy has taken on the role of Clinical Trial Navigator for the MICYRN-RareKids-CAN Initiatives, where she plays a pivotal role in advancing pediatric rare disease research by facilitating project feasibility assessments and supporting start-up processes at CRCHU

Cara Grobbecker is a Research Coordinator and Clinical Trial Navigator at Children’s Hospital London Health Sciences Centre. She works with several Investigators in implementing clinical trials for pediatric rare diseases and serves as the local point of contact for pediatric rare disease clinical trial inquiries.

Faiza Khawaja, MSc, CCRP, CCRA, CMLT, CPPCR is an experienced clinical research professional with over 17 years in clinical trial management, monitoring, coordination and education. She currently serves as Research Project Manager at Holland Bloorview Kids Rehabilitation Hospital, where she leads national research initiatives in neurodevelopmental disorders and also serves as a clinical trial navigator. She is dedicated to making research more accessible, transparent, and family-centred.

My role at the Department of Pediatrics is to facilitate the research activities of members of the department. I have expertise in project management and clinical research, and have participated in various research projects in neonatology, PICU and general pediatrics. I am very interested in improving the clinical research experience for pediatricians, as I firmly believe that it is a key factor in increasing their research capacity and ultimately improve quality, equity and access to health care for children. I also love winter sports and my family, but not in that order!

Dori-Ann Martin is an RN and also the Clinical Trials and Implementation Specialist with the One Child Every Child Program at the Alberta Children’s Hospital. Prior to that she was the Research Coordinator within the Pediatric Intensive Care Unit for 14 years. She has experience in all levels of study coordination and is now taking on a new role focused on expanding support for clinical trials to enhance access to research for the children of the Alberta Children’s Hospital.

Shakiba Rahimeyanjo is a Clinical Research Coordinator at the Research Institute of the McGill University Health Centre. She began her career in oncology research as a Data Entry Coordinator, where she discovered her passion for patient-facing and operational aspects of clinical trials.

Rahimeyanjo now works across multiple therapeutic areas, including rheumatology, genetics and rare diseases, spinal surgery, ophthalmology, and respiratory research.She collaborates closely with patients, investigators, and study teams to ensure the smooth and effective operation of clinical trials.

She studied Clinical Psychology, specializing in child and adolescent psychology, which has deeply influenced the way she connects with and supports participants throughout the research journey.

Rahimeyanjo received the Lieutenant Governor’s Youth Medal (Bronze) in 2013 for her volunteer engagement and positive community impact, an achievement that continues to inspire her work.

Dory has many years of experience in research: in a clinical environment as a research nurse, in a CRO in drug safety, and in industry as a monitor, medical writer, and project manager of international clinical drug trials. She is currently the Clinical Research Director for the Women and Children’s Health Research Institute in Edmonton. Through all of this, Dory has gained a deep understanding of clinical research studies and processes, and strives to think globally and strategically, while promoting the strength and value of collaboration.

Jeannine Schellenberg is the Trial Manager of the Research Support Unit at the Children’s Hospital Research Institute of Manitoba. She plays a key role in facilitation of external relationships with clinicians, researchers, faculty, academic and health care institutions, and industry. Jeannine is the point of contact for any investigator or organization wishing to engage support services from the RSU for the conduct of clinical trials within the institute.

Jeannine started her career as an NICU nurse caring for our most vulnerable patients, then as a research coordinator. She continues to seek to improve the lives of all pregnant people, children, youth, and families in Manitoba through quality research.

I am the Clinical Navigator at the Kingston Health Sciences Centre. With a strong background in clinical research, I have contributed to multiple studies across various therapeutic areas. My experience includes comprehensive patient recruitment strategies, coordination and scheduling of study visits, and meticulous data collection. I have supported both site-level and project office operations, ensuring regulatory compliance and smooth communication between stakeholders. My role has also involved maintaining study documentation, managing databases, and assisting with protocol implementation, making me a skilled and reliable member of any clinical research team.

Ana Stosic, MSc, MBA Candidate, is the Manager of the Genetic Medicines Clinical Trial Support Unit (GM CTSU) at The Hospital for Sick Children (SickKids), where she leads the development of institutional GM CTSU infrastructure, governance, and operational processes supporting advanced therapeutics and genetic medicine clinical trials. Prior to this role, she served as Program Manager for the Neuromuscular Clinical Research Program, overseeing a diverse portfolio of academic and industry-sponsored clinical trials from start-up through close-out. Throughout her career, Ana has led numerous gene therapy clinical trials, along with a broad range of advanced therapy medicinal product (ATMP) and rare disease studies. Her expertise includes clinical trial operations, regulatory strategy, project management, and cross-functional collaboration. She is passionate about advancing clinical trial readiness and improving access to innovative therapies through operational excellence, standardization, and collaborative leadership.

Nicole is the Research Navigator at the CHEO Research Institute in Ottawa, ON. With nearly a decade of involvement in clinical trials, Nicole has extensive experience supporting researchers to navigate complex multi-centre studies. She serves as the primary point of contact for investigators and research teams during the study start up process. Key responsibilities include budget negotiations, supporting feasibility assessments and ensuring regulatory compliance. In addition, Nicole aids teams to overcome challenges and assists with program development and growth.