Meet the Team
CRDN is a growing network led by a Steering Committee and staff. Within the CRDN framework, three thematic Pillar Groups have been established to focus on critical aspects of rare diseases. For more information about our governance structure, click here. For more information about who is on our pillar groups, explore below.
Steering Committee
Our Steering Committee consists of national leaders in various rare and undiagnosed disease fields who provide strategic direction and oversight of the network. Their individual leadership roles and collective rare disease expertise connects the CRDN to existing renowned national and global rare disease organizations and initiatives, strengthening the network’s influence, and creating collaborative opportunities. Click on a member to learn more about them.
Francois Bernier, MD, FCCMG, FRCPC
Committee Chair
Alberta Children’s Hospital (ACH), University of Calgary
Kym M Boycott, MD, PhD, FCCMG, FRCPC
Pillar Lead - Diagnostics and Registries
Children’s Hospital of Eastern Ontario (CHEO), University of Ottaw
Craig Campbell, MD, FRCPC
Children's Hospital Health Sciences Centre (LHSC), Western University
Jim Dowling, MD, PhD
The Hospital for Sick Children, University of Toronto
Angela Genge, MD, FRCP(C)
The Neuro (Montreal Neurological Institute-Hospital), McGill University
Lawrence Korngut, MD
Hotchkiss Brain Institute, University of Calgary
Thierry Lacaze-Masmonteil, MD, PhD
University of Calgary, Maternal, Infant, Child, and Youth Research Network (MICYRN)
Deborah Marshall, PhD
Alberta Children's Hospital Research Institute (ACHRI), University of Calgary
Jacques L. Michaud, MD
Centre de recherche du CHU Sainte Justine, Université de Montréal
Gail Ouellette, PhD
iRARE Centre, Regroupement Québécois des maladies orphelines (RQMO)
Jonathan Pratt, PhD, MBA
Regroupement Québécois des maladies orphelines (RQMO)
Breanne Stewart, BSc, BScN, RN
RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network
Leanne Ward, MD, FRPCPC
Pillar Lead - Innovative Therapies
Children's Hospital of Eastern Ontario (CHEO), University of Ottawa
Durhane Wong-Rieger, PhD
Canadian Organization for Rare Disorders (CORD)
Pillar 1 - Diagnostics & Registries
This group of leading experts is pivotal in shaping strategies that enhance diagnostic tools, expand integrated registries, and strengthen screening approaches for rare diseases. Explore the profiles of our members to learn more about their contributions and roles.
Kym M Boycott, MD, PhD
Pillar Lead - Diagnostics and Registries
Children’s Hospital of Eastern Ontario (CHEO), University of Ottawa
Jodi Warman Chardon, MD, PhD, FRCPC
The Ottawa Hospital, Children's Hospital of Eastern Ontario (CHEO), University of Ottawa
Gregory Costain, MD, PhD
The Hospital for Sick Children, University of Toronto
Taila Hartley, PhD
Care4Rare Canada
Lawrence Korngut, MD
Hotchkiss Brain Institute, University of Calgary
Bhavi Modi, PhD
BC Children's Hospital Research Institute, University of British Columbia
Jillian Parboosingh, PhD, FCCMG
University of Calgary
Beth Potter, PhD
University of Ottawa
Myriam Srour, MDCM, PhD
Montreal Children's Hospital, McGill University
Stuart Turvey, MBBS, DPhil, FRCPC
BC Children's Hospital (BCCH), University of British Columbia
Hilary Vallance, FRCPC, FCCMG, MD
BC Children's Hospital (BCCH), University of British Columbia
Pillar 2 - Innovative Therapies Group
This group of leading experts is pivotal in shaping strategies that enhance infrastructure to support therapy development, including pre-clinical and clinical research frameworks, and streamline access to clinical trials and regulatory pathways to facilitate timely delivery of new therapies to patients. Explore the profiles of our members to learn more about their contributions and roles.
Leanne Ward, MD, FRPCPC
Pillar Lead - Innovative Therapies
Children's Hospital of Eastern Ontario (CHEO), University of Ottawa
Craig Campbell, MD, FRCPC
Children's Hospital LHSC, Western University
Pranesh Chakraborty, MD, FRCPC, FCCMG
Children's Hospital of Eastern Ontario (CHEO), University of Ottawa
Jim Dowling, MD, PhD
The Hospital for Sick Children, University of Toronto
Heather Howley, PhD
Children's Hospital of Eastern Ontario (CHEO) Research Institute, BORN Ontario
Thierry Lacaze-Masmonteil, MD, PhD
University of Calgary, Maternal, Infant, Child, and Youth Research Network (MICYRN)
Hanns Lochmüller, MD, PhD, FAAN
The Ottawa Hospital, Children's Hospital of Eastern Ontario (CHEO)
Kim McBride, MD
Alberta Children's Hospital Research Institute (ACHRI), University of Calgary
Maryam Oskoui, MD
Montreal Children's Hospital, McGill University Health Centre, McGill University
Breanne Stewart, BSc, BScN, RN
RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network
Risini Weeratna, PhD
Cell and Gene Therapy Program, National Research Council (NRC)
Durhane Wong-Rieger, PhD
Canadian Organization for Rare Disorders (CORD)
Larry D. Lynd
Centre for Health Evaluation and Outcome Sciences (CHEOS), Providence Health Care Research Institute
Pillar 3 - Care, Support, & Empowerment
This group of leading experts and thought leaders focuses on strategies that enhance patient, family, and community-centred care by integrating resources, improving access to services, and empowering individuals through active participation in care and research. Explore the profiles of our members to learn more about their contributions and roles.
John Adams, BA
Canadian PKU and Allied Disorders
Jillian Banfield, PhD
Canadian Institutes of Health Research (CIHR) - Institute of Genetics
Brad Crittenden, CAD-CAM
Canadian Association of Pompe
Deborah Marshall, PhD
Alberta Children's Hospital Research Institute (ACHRI), University of Calgary
Homira Osman, PhD
Muscular Dystrophy Canada
Gail Ouellette, PhD
iRARE Centre, Regroupement Québécois des maladies orphelines (RQMO)
Stephen Parrott, BCom
Kidney Cancer Canada
Jonathan Pratt, PhD, MBA
Regroupement Québécois des maladies orphelines (RQMO)
Nicola Worsfold, PhD
Defeat Duchenne Canada
CRDN Staff
Svenja Espenhahn, PhD
Manager
Svenja Espenhahn is the manager of the CRDN, responsible for the effective development and functioning of the CRDN and its diverse activities for the benefit of the rare disease community. She completed her PhD in Clinical Neuroscience from the University College London (UCL) in the UK before moving to Canada for a postdoctoral appointment at the University of Calgary where she worked with kids with autism. Svenja brings a wealth of knowledge and experience in project management, grant writing and stewardship, and community engagement in the academic and not-for-profit settings. Svenja is also a passionate ultra-runner who spends most of her free time in the mountains, and an emergency services volunteer with the MD of Bighorn.
Karishma Samra, M.Ed
Engagement Coordinator
Karishma Samra is the Engagement Coordinator at the CRDN, dedicated to fostering inclusive initiatives, collaborations, and community engagement. Karishma has completed her Master of Education in School Counselling from the University of Alberta. Karishma is also a doctoral student researching how women of color with rare diseases engage with patient education programs, with a focus on advancing culturally competent care. She is passionate about lifelong learning, systems change, and amplifying voices that are often excluded from traditional healthcare narratives. Passionate about adult learning, Karishma brings a wealth of experience to the CRDN.