Board of Directors
Elsa Chouinard
President
Casandra Poitras
Administrator
Casandra Poitras has been in diagnostic limbo for some
years now. This personal experience has nurtured a deep commitment to
advancing the cause of rare diseases in Quebec, particularly in
the arena of governance. She devotes her efforts to improving the
representativeness of people living with rare diseases, as well as the quality and
coordination of their care within the healthcare system.
As a Master’s student in Public Administration, research profile, she
is particularly interested in the dynamics between the players involved in
the development and implementation of Quebec’s first policy on
rare diseases. Throughout the healthcare network, she wears many hats,
acting as patient partner, consultant and user expert.
Her career has also been marked by a sustained interest in politics and
public governance mechanisms. She is the founder of Conseils
Zèbre Politique, and collaborates with a number of key players, both in Canada and internationally at
, on issues relating to disability, misdiagnosis,
rare diseases and governance.
Nadie Rioux
Secretary
Trained as a nurse since 1997, Nadie Rioux has been working at CHU de Québec since 2009, where she currently holds the position of Assistant Coordinator, Clinical Trial Monitoring. As a resource person for rare diseases at the Centre de recherche du CHU de Québec-Université Laval, as part of the PRISMES project, she supports families through the diagnostic process, participates in the search for new genes and contributes to the analysis of genetic data. Her expertise in clinical research, quality and rare diseases makes a strategic contribution to the RQMO Board of Directors, in support of its mission to represent, raise awareness and improve access to care for people living with rare diseases.
James Doyle
Treasurer
James is a scientific entrepreneur passionate about transforming healthcare through innovation and technological advances. He has held various leadership positions within BioTech and MedTech start-ups, helping to commercialize transformative technologies for patients. A scientist by training with 11 years’ experience in research, mainly in the field of rare genetic diseases, he has a deep understanding of the challenges facing the “Rare community”. He has therefore made it his mission to support patients by advancing therapeutic development, and to improve their access to resources. His entrepreneurial experience in strategy, operations and business development enables him to bring a unique perspective to support RQMO’s mandates and growth.
James holds a B.Sc. in Biochemistry from Concordia University and a PhD in Experimental Medicine from McGill University. He also served for 5 years in the Canadian Armed Forces.
Kevin Bouchard
Director
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.
Arianne Jobin-Chamberland
Administrator
She currently holds the position of Communications Advisor at CHU de Québec-Université Laval, where she coordinates communications between multiple stakeholders, manages media and government relations, and contributes to the realization of large-scale initiatives. Her role requires her to evolve in complex environments that call for rigor, a sense of strategy and great adaptability.
Recognized for her versatility, creativity and professionalism, Arianne puts her skills to work for organizations, helping them to raise their profile and strengthen their credibility. Her commitment to the Board of Directors is part of a concrete desire to contribute to the Foundation’s mission and support its development for the benefit of the community.
Geneviève Lajeunesse
Administrator
Geneviève Lajeunesse has been involved for nearly 20 years with various community groups, marginalized people and civil society organizations. Its areas of focus are information security, digital literacy, support for research 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.