# Leadership Leadership RareKids-CAN's leadership structure brings together scientific, operational, and clinical expertise from across Canada to guide the network's strategic direction, oversee key initiatives, and support the successful delivery of pediatric rare disease clinical trials. Together, our leadership teams ensure collaboration, accountability, and excellence across every aspect of the network. Meet our Executive Committee RareKids-CAN's Executive Committee oversees the scientific, regulatory, ethics, and legal compliance of the network's activities. Dr. Geneviève Bernard Read Bio 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 Read Bio 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) Read Bio 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 Read Bio 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 Read Bio 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 Read Bio 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) Read Bio 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 Read Bio 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 Read Bio 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) Read Bio 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 Read Bio 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 Read Bio 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 Read Bio 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. Meet our experts RareKids-CAN’s strategic priorities are advanced through our range of expertise. Each team is led or co-led by experienced experts who champion activities within their area of expertise and work alongside multidisciplinary teams to translate RareKids-CAN’s strategic priorities into action. Together, these teams develop, implement, and deliver the initiatives, resources, and services that advance the network’s goals across Canada. Jump to the expertise to learn more by clicking below: Capacity building and knowledge sharing Expertise and Innovation Inclusivity and Lifespan Engagement IT and data science Regulatory Affairs and Strategic Partnership Capacity Building and Knowledge Sharing Knowledge Mobilization and Synthesis RareKids-CAN’s Knowledge Mobilization and Synthesis team transforms research, evidence, and lived experience into practical resources, tools, and knowledge-sharing activities that support action across the network. The team works across all three strategic priorities to help ensure that emerging knowledge is synthesized, shared, and translated into resources that are relevant, accessible, and useful to researchers, clinicians, patients, families, and other partners. Dr. Terry Klassen Knowledge Mobilization and Synthesis Co-Lead Read Bio Dr. Lisa Knisley Knowledge Mobilization and Synthesis Co-Lead Read Bio Training and Mentorship RareKids-CAN’s Training and Mentorship team supports Strategic Priority 1 , with a particular focus on Key Initiative 1.1: Academic Leadership, Guidance & Training by developing educational and mentorship opportunities that strengthen capacity for high-quality pediatric rare disease clinical trials. Through webinars, resources, training awards, and its partnership with IMPaCT, the team provides emerging investigators with structured mentorship, practical learning, and access to clinical trial training across career stages. Dr. Nancy Butcher Training and Mentorship Co-Lead Read Bio Dr. Lauren Kelly Training and Mentorship Co-Lead Read Bio Expertise and Innovation Biostatistical Methods RareKids-CAN’s Biostatistical Methods team supports Strategic Priority 1, with a particular focus on Key Initiative 1.1: Academic Leadership, Guidance and Training by providing statistical expertise for pediatric rare disease clinical trials. The team provides tailored consultations to support the development of high-quality pediatric rare disease clinical trials, including study design, sample size considerations, statistical analysis planning, and interpretation of results. They are also developing a searchable database of pediatric rare disease trial protocols and reports. Dr. Anna Heath Biostatistical Methods Co-Lead Read Bio Dr. Chris Gravel Biostatistical Methods Co-Lead Read Bio Methods and Design RareKids-CAN’s Design and Methods team advances Strategic Priority 1, particularly Key Initiative 1.1: Academic Leadership, Guidance and Training, by supporting meaningful, feasible, and fit-for-purpose outcomes in pediatric rare disease clinical trials. Through consultations, the team helps investigators identify appropriate outcome domains and measurement tools, refine study designs. The team also develops practical tools, guidance, and educational resources to support researchers, patients, and families in understanding and contributing to high-quality outcome selection. Dr. Martin Offringa Methods & Design Lead Read Bio Pharmacology RareKids-CAN’s Pharmacology, Pharmacogenomics and Translational Pharmacometrics team advances Strategic Priority 1, through Key Initiative 1.1: Academic Leadership, Guidance and Training and Key Initiative 1.2: ATMP training material and Standard Operating Procedures (SOPs). The team provides individualized consultations for pediatric rare disease clinical trials, offering expertise in dose selection, pharmacokinetics, pharmacogenomics, and pharmacometrics, strengthening study design and treatment optimization. They also develop accessible ATMP educational resources for patients, families, and researchers that explain how therapies work, how they are processed in the body, and how safety is assessed, helping support informed participation in research and treatment decisions . Dr. Tamorah Lewis Pharmacology Co-Lead Read Bio Michelle Wang Pharmacology Co-Lead Read Bio Inclusivity and Lifespan Engagement Patient & Family Engagement RareKids-CAN’s Patient and Family Engagement team supports the entire network across all three strategic priorities, helping ensure that the perspectives, experiences, and priorities of patients and families are meaningfully reflected in RareKids-CAN’s activities, resources, and decision-making. The team fosters collaboration between researchers, patients, and families and supports a range of engagement opportunities, from short-term consultations to long-term partnerships within research teams and network initiatives. Informed by both professional expertise and lived experience, the team also builds capacity, strengthens community, and promotes meaningful, inclusive patient and family partnership across RareKids-CAN. Dr. Andrea Cross Patient & Family Engagement Co-Lead Read Bio Sara Pot Patient & Family Engagement Co-Lead Read Bio Alicia Hilderley Patient & Family Engagement Co-Lead Read Bio Indigeneity and Equity Diversity and Inclusion (EDI) Committee RareKids-CAN advances equity and inclusion through its Indigeneity team and EDI Committee. The Indigeneity team leads Indigenous engagement, cultural safety, and data governance, with guidance from the Indigenous Community Guiding Circle. The EDI Committee focuses more broadly on EDI across the network. Its work includes identifying barriers faced by equity-deserving groups, supporting inclusive trial design and recruitment, advancing translation and accessibility supports, strengthening demographic data collection, and developing guidance and education for researchers and network members. Collectively, these two groups help ensure that RareKids-CAN’s initiatives, governance, and clinical trial activities are more inclusive, culturally responsive, and equitable for the diverse communities the network serves. Dr. Alexandra King Indigeneity Co-Lead Read Bio Dr. Malcolm King Indigeneity Co-Lead Read Bio Dr. Ashish Marwaha EDI Lead Read Bio Sex and Gender RareKids-CAN’s Sex and Gender team contributes primarily to Strategic Priority 1, through Key Initiative 1.1: Academic Leadership, Guidance and Training. The team works to strengthen the integration of Sex- and Gender-Based Analysis Plus (SGBA+) in pediatric rare disease clinical trials by examining current practices, identifying unmet needs for investigators and participants, and developing practical guidance and consultation support to help trial teams incorporate SGBA+ into study design, conduct, and analysis. Dr. Meng-Chuan Lai Sex & Gender Lead Read Bio Transition to Adulthood RareKids-CAN’s Transition to Adulthood team contributes primarily to Strategic Priority 1, through Key Initiative 1.1: Academic Leadership, Guidance and Training. The team works with youth and caregivers to better understand the unique challenges faced by adolescents and young adults with rare diseases as they transition from pediatric to adult care and participate in clinical trials. The team also develops guidance and consultation resources for researchers, industry, and government to support the inclusion, participation, and retention of adolescents and young adults with rare diseases in clinical research, while promoting thoughtful transitions between pediatric and adult care environments. Dr. Michelle Batthish Transition to Adulthood Lead Read Bio IT and Data Science Data Coordinating Centre RareKids-CAN’s Data Coordinating Centre (DCC) team supports Strategic Priority 1 and 2, including Key Initiative 1.5: Centralized supports for ATMPs trials and Key Initiative 2.1: Trial matching & patient identification. The DCC provides centralized infrastructure and operational support for pediatric rare disease trials through a validated REDCap environment hosted by WCHRI. Services span database development, randomization, data and safety monitoring, enrolment reporting, quality assurance, adverse event coding, interim and safety reporting, data cleaning, and database closeout. The DCC also collaborates with the Real World Data team on long-term outcome tracking through data linkage. Additionally, they are exploring privacy-preserving AI approaches to de-identify unstructured clinical documents, enabling broader data use while protecting participant privacy. Dr. Lawrence Richer Data Coordinating Centre Lead Read Bio Real World Data RareKids-CAN’s Real-World Data (RWD) Team supports Strategic Priority 1 and 2, including Key Initiative 1.1: Academic leadership, guidance & training initiative, Key Initiative 2.1: Trial matching & patient identification and Key Initiative 2.2: Registry Development Support. The team works to strengthen how real-world data are identified, connected, standardized, and used to support pediatric rare disease clinical trials, patient identification, long-term follow-up, and evidence generation. Key areas of work include developing and maintaining searchable, living inventories of pediatric rare disease clinical trials and existing rare disease registries; and exploring approaches to identify patients with rare diseases using structured and unstructured health data. The team also works with registry partners to develop shared data standards, minimum datasets, interoperability approaches, and data linkages across registries, hospitals, and administrative health data sources. Dr. Elodie Portales-Casamar Real World Data Lead Read Bio Registry RareKids-CAN’s Registry team advances Strategic Priority 1 and 2, in particular, Key Initiative 1.1: Academic leadership, guidance & training initiative, Key Initiative, Key Initiative 2.1: Trial matching & patient identification and Key Initiative 2.2: Registry Development Support. The team strengthens pediatric rare disease registry infrastructure and supports trial readiness, feasibility, participant identification, and long-term evidence generation through searchable trial inventories, centralized feasibility tools, patient and family resources, and registry development guidance. The team also provides individualized consultations to investigators developing longitudinal registries that can help identify potential participants for emerging therapies, support external control data for single-arm trials, enable registry-based clinical trials, and generate post-trial real-world evidence to inform health technology assessment and reimbursement decision-making. Dr. Beth Potter Registry Lead Read Bio Regulatory Affairs and Strategic Partnership Health Canada Relations and Advocacy RareKids-CAN’s Health Canada Relations and Advocacy team supports Strategic Priority 3, in particular, Key Initiative 3.1: Regulatory Pathways. In partnership with the SickKids Child Health Policy Accelerator, the team leads a national Community of Practice on Advancing Pediatric Regulatory Reform, bringing together clinical trialists, regulatory experts, policy leaders, and patient and family partners from across Canada. The team works to identify and address regulatory barriers that make pediatric clinical trials more complex, costly, and difficult to launch, while also limiting timely access to innovative therapies. Through policy development, consultation responses, stakeholder engagement, and direct dialogue with Health Canada, the Sub-Platform advocates for a more modern, efficient, and internationally aligned regulatory framework that better supports pediatric research and improves access to emerging treatments for children and families. Dr. Charlotte Moore-Hepburn Health Canada Relations and Advocacy Lead Read Bio Health Economics, Health Technology Assessment and Reimbursement RareKids-CAN’s Health Technology Assessment (HTA) and Health Economics (HE) teams work together to strengthen access to pediatric rare disease therapies. The HTA team supports Strategic Priority 1 and 2, in particular, Key Initiative 1.1: Academic leadership, guidance & training initiative by developing educational resources, tools, and webinars that build capacity for patients, families, clinicians, and researchers to understand and participate in HTA and evidence-based decision-making. The team also supports navigation of post-market access pathways and incorporation of pediatric evidence and lived experience into HTA processes. The HE team contributes economic expertise to HTA activities and Strategic Priority 3, specifically, Key Initiative 3.3: Access pathways for therapies unfit for commercialization, exploring sustainable reimbursement pathways, outcome-based agreements, and methods to assess quality of life and value in pediatric rare disease populations. Dr. Maryam Oskoui Health Economics, Health Technology Assessment & Reimbursement Co-Lead Read Bio Dr. Jeff Round Health Economics, Health Technology Assessment & Reimbursement Co-Lead Read Bio Sustainability and Business Development RareKids-CAN’s Business Development and Sustainability team strengthens network-wide financial sustainability, partnerships, and growth. The team develops sustainable fee-for-service models, builds relationships with industry, funders, and government, supports grant development, and advances international collaborations. It also facilitates investigator and site identification and engages federal and provincial partners to support future investment and expansion. Dr. Thierry Lacaze-Masmonteil Sustainability and Business Development Lead Read Bio Meet the Coordinating Hub The Clinical Trial Operations and Coordinating Hub supports the day-to-day coordination and implementation of RareKids-CAN activities. The Hub organizes meetings, connects partners and experts, supports network communication, and helps ensure activities, timelines, and deliverables remain aligned with RareKids-CAN's strategic priorities. The Hub also reviews clinical trial project requests and coordinates decisions related to service support and subsidy allocations, helping study teams access the right RareKids-CAN expertise, services, and sub-platform supports. In addition, the Hub leads key national initiatives to strengthen pediatric rare disease clinical trial readiness, including work on Advanced Therapy Medicinal Products, national training materials and guidance documents, access pathways for therapies unlikely to be commercially developed, and international collaboration. Together, these activities support more efficient, equitable, and accessible pediatric rare disease clinical trials across Canada. Lori Anderson Regulatory Affairs Consultant Read Bio Lori brings more than 20 years of experience as a Health Canada regulatory specialist, supporting academic institutions, investigators, research networks, and external partners with regulatory submissions across multiple Health Canada directorates. Her expertise includes gene therapies, cell therapies, antisense oligonucleotides (ASOs), drugs, biologics, natural health products, and medical devices, complemented by 10 years of prior experience as a Clinical Research Associate in cardiology.  Within RareKids-CAN, Lori provides regulatory leadership for both the Clinical Trial Operations and Coordinating Hub (CTOCH) and the Health Canada Relations and Advocacy Sub-Platform. She supports key regulatory discussions with Health Canada, supports complex pediatric rare disease trials, and advances regulatory initiatives related to therapies unfit for commercialization, including pathways to enable access where traditional commercial development may not be feasible. Yunna Bystrova Executive Coordinator Read Bio Yunna Bystrova joined MICYRN in February 2023 and soon found her home in the RareKids-CAN Network, where every day brings a new puzzle to solve (and occasionally, a few to create). Her career path has taken her from the Apparel to the Music industries across Europe and Asia, giving her a wide range of project management and organizational experience. A committed team player with a love of learning, Yunna thrives on keeping things running smoothly so others can focus on the big picture. As Executive Coordinator for RareKids-CAN, she blends efficiency with a healthy dose of curiosity, helping the team make a meaningful impact for children and families affected by rare diseases. Kelly Sandhu Project Manager Read Bio Kelly Sandhu (MSc, BSc) is the project manager for RareKids-CAN, providing management leadership. She has a Master's in Health Psychology and has worked in multiple specialties in paediatric research, such as rheumatology, neurology and renal. With a strong passion for research, Kelly has over ten years of experience in academic and clinical research across Europe and Canada. She was awarded the Edward Jenner Leadership Award from the National Health Service in the UK. This has contributed to her leadership approach when training and mentoring research staff, students, and volunteers. Dr. Catherine Strandt (DMSc) Program Manager Read Bio Dr. Catherine Strandt (DMSc) is the Program Manager for RareKids-CAN, providing leadership across academia, nonprofit, government, and industry to advance pediatric rare disease research and innovative drug development. She specializes in rare disease strategy, clinical trial readiness, and patient advocacy, and holds a Doctor of Medical Sciences from Northeastern University. Previously, Dr. Strandt was a Clinical Research Fellow at Global Genes, co-leading the Research Readiness Program, and worked at Harvard Medical School and Boston Children’s Hospital supporting multi-disciplinary research for rare genetic and neurological disorders. She serves on the Boards of STEPS Medical Clinics and CureAP4 and is President of the Vancouver, BC Alumnae-i Network for Harvard Women, championing patient-centered research, mentorship, and community engagement. Breanne Stewart (Ex Officio) Network Director Read Bio 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. Thierry Lacaze-Masmonteil (Ex Officio) Nominated Principal Investigator Read Bio 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. Meet the Clinical Trial Navigators Our Clinical Trial Navigators play a crucial role in the RareKids-CAN network. These 16 individuals, based at 16 institutions across Canada are greatly positioned to serve as our "boots on the ground" by actively driving network initiatives, linking their local investigators with clinical trial opportunities, and gathering metrics to evaluate clinical trial success across Canada. Ameen Abdelmajid Read Bio 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. Daislyn Adedokun Read Bio 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! Humaira Ahmed Read Bio 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 Akli Read Bio 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 Andres Read Bio 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. Frédérique Badeaux Read Bio Coming soon! Davy Eng Read Bio 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 Read Bio 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 Read Bio 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. Geneviève Legault Read Bio 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 Read Bio 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 Read Bio 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 Sample Read Bio 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 Read Bio 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. Sidra Shafique Read Bio 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 Read Bio 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 Whitley Read Bio 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.