Team

Jonathan Pratt

General Manager

With a PhD in biochemistry and an MBA, Jonathan Pratt has held a wide variety of positions. From scientific researcher to municipal manager, via first aid, swimming and lifesaving training, Mr. Pratt has developed his interpersonal and management skills in a variety of professional contexts. During his studies, Mr. Pratt acquired extensive experience in scientific research, and more specifically in the molecular genetics of certain cancers, in particular brain tumours. As Executive Director of the Regroupement québécois des maladies orphelines since July 2022, Jonathan intends to pursue RQMO’s efforts to raise the patient voice and highlight the issues and needs of people with rare diseases in Quebec.

Victoria Toro

Head of Research and Partnerships

Victoria holds a Master’s degree in Physiology from the Université Claude Bernard in France, followed by a Doctorate in Clinical and Biomedical Sciences, affiliated with the Faculty of Medicine at Université Laval in Canada. Her research focused on pulmonary hypertension and breast cancer. She pursued her interest in basic research with a post-doctorate, affiliated to the Faculty of Pharmacy at Laval University. His work focused on the IGFBP-2 protein in people with liver inflammation.

Victoria’s academic career, split between France and Canada, was enriched by a number of professional experiences in various fields, and only served to fuel her curiosity and desire to become more involved in the healthcare field.

Now in charge of Research and Partnerships at the Regroupement Québécois des Maladies Orphelines (RQMO), Victoria is responsible for a number of mandates, including building more bridges between patients, caregivers, research and health institutes and associations. Aware that today’s students are tomorrow’s professionals, Victoria encourages teaching on rare diseases by proposing university interventions with the aim of raising the profile of rare and orphan diseases in the province of Quebec.

Maya Bou Dagher

Center Intervenante iRARE

Maya Bou Dagher holds a master’s degree in molecular biology, which she obtained in 2019, and has experience in hospital and research settings. She currently holds the position of Information Officer at the iRARE Centre of the Regroupement québécois des maladies orphelines (RQMO). Her responsibilities include supporting people with rare diseases and their families by facilitating access to reliable information, community resources and support networks. She is particularly sensitive to the issues faced by families affected by rare diseases.

Caroline Joseph

Administrative Assistant

Caroline Joseph’s unique expertise stems from a long journey of diagnostic wandering with her son, which began in 2008 and led to a diagnosis 14 years later. This journey, punctuated by uncertainties and medical hypotheses, has enabled her to acquire in-depth knowledge of the reality of the world of rare diseases as experienced in the field. Today, she puts this experience at the service of the organization’s mission, and continues her commitment to her son by collaborating with and supporting researchers in England, where research into his very rare and newly-identified disease is taking place. For her and her son, international collaboration in rare diseases is essential and a fundamental aspect of their journey.

Ingrid Younes

Patient engagement manager; speaker at CENTRE iRARE

Ingrid holds a master’s degree in molecular biology, specializing in breast cancer and HIFU (high-intensity focused ultrasound) therapy. She also holds a master’s degree in public health, with a specialization in global health.
In this context, she worked on a booklet for schoolgirls in the Kayes region of Mali, raising awareness of menstruation and dispelling the myths surrounding it.

She also holds several certifications attesting to her participation in training courses in psychology. A musician, she plays the piano and qanoun. She speaks Arabic, French, English and Syriac at an elementary level.

Ingrid aspires to bring gentleness, a spirit of service and inner awakening into the lives of the people she meets, while letting humility inhabit her every step.

Marie-Eve Fleury

Center Intervenante iRARE

Marie-Ève has been working at
RQMO’s iRARE information and support center since 2023. She holds a bachelor’s degree in social work and has
long worked as a social worker in the health and
social services network, with a variety of clienteles.

She is also the mother of two special-needs children with
complex and rare conditions, which has given her hands-on experience
of the issues surrounding rare and orphan diseases. She now combines
this expertise with her background as a psychosocial counsellor to
support people affected by rare diseases and help raise awareness
of this reality.

Gail Ouellette

Was founding president of RQMO from 2010 to 2023.

Genetic counsellor; coordinator of the Canadian Network of iRAREs Centres

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.