Meet the CRDN Team
CRDN is a growing network led by a Steering Committee and staff. For more information about our governance structure, click here.
Steering Committee
Our Steering Committee consists of 14 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 organisations and initiatives, strengthening the network’s influence, and creating collaborative opportunities.
Francois Bernier, MD
Committee Chair
Alberta Children’s Hospital Research Institute (ACHRI), University of Calgary
Kym M Boycott, MD PhD
Pillar Lead - Diagnostics and Registries
Children’s Hospital of Eastern Ontario (CHEO) Research Institute, University of Ottawa
Craig Campbell, MD
Children's Hospital LHSC, Western University
Jim Dowling, MD, PhD
Sick Kids Hospital, University of Toronto
Angela Genge, MD
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, RQMO
Jonathan Pratt, PhD, MBA
Regroupement Québécois des maladies orphelines (RQMO)
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)
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. She previously worked as a program coordinator for the Faculty of Science-Undergraduate Student Center. Prior to her transition to the post-secondary world, Karishma was a high school math and science teacher. She taught for four years and worked as a high school counsellor as well. Karishma has completed her Master of Education in School Counselling from the University of Alberta, focusing on Academic Burnout in High School students. Passionate about adult learning and student mental health, Karishma brings a wealth of experience to the CRDN. In her free time, she coaches a high school basketball senior girls’ team and is training for her first 10K marathon.
Fiona Labonté
Engagement Assistant
Fiona Labonté is a Loran Scholar who serves as the Engagement Assistant at the CRDN. Fiona is a student at the University of Ottawa, pursuing a degree in Anthropology. Prior to her current role, Fiona has gained experience working with the Franco-Ontarian youth organization. She is also the Vice-President of University Affairs for her student organization at UOttawa. When Fiona isn’t busy with her academic and professional commitments, she enjoys reading, watching movies, and exploring the sights and sounds of Ottawa. Fiona’s diverse interests and involvement in the local community showcase her well-rounded personality and dedication to making a positive impact.