Team
BOARD OF DIRECTORS
Kévin Bouchard
President
Kévin completed his doctorate in computer science in 2014 on qualitative spatial reasoning for machine learning in the context of ambient intelligence. He worked as a postdoctoral fellow at the University of Sherbrooke, then as a researcher at the University of California Los Angeles (UCLA) following his studies. Since August 2016, he has been a professor at the Université du Québec à Chicoutimi (UQAC). There he conducts research on the application of artificial intelligence to create technological tools for various semi-autonomous populations or those experiencing loss of autonomy (chronic illness, cognitive impairment, etc.). More specifically, several of its projects involve the use of sensors (RFID, UWB, etc.) in order to create intelligent habitats to recognize daily life activities and assist people in carrying them out. He is closely affected by orphan diseases since his partner suffers from Elhers-Danlos syndrome and other rare conditions.
Nadie Rioux
Secretary
Trained as a nurse since 1997, Nadie initially worked in a hospital critical care unit. Since 2009, she has worked as a research coordinator in different areas of expertise. Son intérêt pour les maladies rares et la génétique s’est manifesté en 2018 en devenant une référence pour les maladies rares au Centre de recherche CHU de Québec-Université Laval-Axe Neurosciences au sein du projet de recherche PRISMES (Programme de Recherche et Innovation Sur les maladies rarES). Ses responsabilités consistent à l’accompagnement des familles dans le processus exomique, la recherche de nouveaux gènes et d’effectuer des analyses génétiques.
Nadie is also recognized for her ability to collaborate with international researchers, thereby strengthening the global dimension of rare disease research. Her dedication to this noble cause and her commitment to improving the quality of life of people affected by rare diseases make her an inspiring and indispensable figure in the field of health and medical research.
James Doyle
Treasurer
James is a science entrepreneur passionate about transforming health through innovation and technological advancement. He has held various leadership positions within BioTech and MedTech start-ups, helping to commercialize transformative technologies for patients. A trained scientist with 11 years of research experience, primarily in the field of rare genetic diseases, he has a deep understanding of the challenges faced by the “Rare community”. So, he has made it his mission to support patients by advancing therapeutic development and to improve their access to resources. His entrepreneurial experience in the areas of strategy, operations and business development allows him to bring a unique perspective to support the mandates and growth of the RQMO.
James holds a Bachelor’s degree in Biochemistry from Concordia University and a Doctorate in Experimental Medicine from McGill University. He also served for 5 years in the Canadian Armed Forces.
Geneviève Lajeunesse
Administrator
Geneviève Lajeunesse has been involved for nearly 20 years with various community groups, marginalized people and civil society organizations. Her areas of focus are information security, digital literacy, research support and amateur sport. Suffering from a rare disease herself and having been on a long journey before obtaining a diagnosis, she hopes to be able to contribute to the mission of the RQMO by smoothing the road to diagnosis and treatment for as many people as possible.
Annie Perreault
Administrator
Annie Perreault has been a clinical psychologist for more than 20 years, having also held the position of psychologist in GMF-U (a family medicine group) and Clinical Professor affiliated with the Faculty of Family Medicine and Emergency Medicine at Université Laval. She now divides her time between teaching, clinical supervision, training development and psychotherapy offered to clients affected by depression, anxiety, post-traumatic stress and rare or chronic illnesses. She is also a speaker, trainer and founder of Formations Syllabus, a company which aims to develop knowledge and skills in the field of psychology. In the past, she was involved as a volunteer within the RQMO but also with the Canadian Mastocytosis Society for several years.
Other board members:
- Nancy Tavares
- Alexander Galli
- Casandra Poitras
TEAM
Jonathan Pratt, Executive Director
Caroline Joseph, Administrative Assistant
Christine Yergeau, Research and Partnerships Coordinator; Information agent for the iRARE CENTRE.
Ingrid Younes, Patient Engagement Coordinator; Information agent for the iRARE CENTRE.
Marie-Eve Fleury, Research and Partnerships Coordinator; Information agent for the iRARE CENTRE.
Gail Ouellette, genetic counsellor; coordinator of the Canadian Network of iRARE Centres
Gail Ouellette
was the founding president of the RQMO from 2010 to 2023.
A genetic counselor by training (MSc from McGill University), during her practice in a medical genetics department (Centre hospitalier universitaire de Sherbrooke), she noted the lack of resources for individuals and families struggling with a rare genetic disease. Seeing how other countries were recognizing rare diseases as a disease category with special needs and moving forward in developing programs and action plans to serve them, she co-founded the RQMO with rare disease associations and individual patients. . In addition to advocating for a strategy for rare diseases in Quebec, she established the iRARE Centre, an information and support center for rare diseases.
Holder of a doctorate in molecular biology (Université de Montréal), she has carried out research in the field of genomics. In 2015, she received a Recognition Award from the Faculty of Sciences of the Université du Québec à Montréal (UQAM) for her work in the field of rare diseases. She is the creator of an educational website in genetics (Genetics Simply) and she continues to help the RQMO as a genetic counsellor.
