Head of Research Branch
Alex is a PhD student in Neuroscience at McGill. Having grown up in a family affected by a rare neurodegenerative disease, Alex knows first-hand of the struggle patients and their loved ones face. She has been involved with various PAGs over the years, most notably, the United Leukodystrophy Foundation since 2008. Alex also spent 3 summers working for Easter Seals as a supervisor at their overnight camp for children with physical disabilities, helping her campers achieve greater independence, accessibility and integration. Her experiences have driven Alex to pursue a career in rare disease research which she is currently fulfilling in the laboratory of Dr. Bernard. Alex is one of the students spearheading the creation of a rareDIG research chapter in order to better bridge the fundamental “bench to bedside” link in patient care and advocate the importance and value of researching orphan disorders.
Past President & Senior Advisor
Danny is a fourth-year medical student at McGill University. He completed his Bachelors in Nursing at McGill University and subsequently worked as a nurse at the Montreal Children’s Hospital. While coordinating care and clinical trial needs for children living with neuromuscular degenerative disorders, Danny witnessed families hindered by both the paucity of medical interventions and diminished access to novel therapies. He joined rareDIG in hopes of raising awareness about rare diseases amongst students in healthcare and explore ways to improve care and access for patients.
Past President & Senior Advisor
Émilie is a third year medical student at McGill University. She completed the Med-p program before entering medical school. She first heard of rareDIG at a club fair, where she quickly started to get involved to help give a voice to rare disease patients and make it heard by medical students in the hopes of raising awareness and improving the patients' experiences within the healthcare system. Throughout her journey with rareDIG. Émilie has witenessed the importance of compassion and determination in order to offer the best care to all, and hopes to share these values through this outlet.
Michael is a medical student at McGill University. He completed his BSc in Physiology and Pharmacology at the University of Toronto before entering medical school. Upon conducting basic science, clinical, and translational medicine research, it became clear that patients with rare diseases require a voice. This motivated him to lead a student advocacy group for rare diseases named Ben’s Friends Patient Communities at the University of Toronto, and expand to McGill’s Rare Disease Interest Group, where he aims to see the world through the lens of the patient, and echo the patient’s voice and their perspective with the world.
Stefanie is a PhD candidate in Neuroscience at McGill University, who was motivated to join the research branch of the rareDIG to expand awareness of rare diseases to other students and researchers. For her PhD research, Stefanie studies rare inherited white matter disorders called leukodystrophies, with a focus on determining new genetic causes for hypomyelinating leukodystrophies, as well as on identifying the pathophysiological mechanisms associated with POLR3-related leukodystrophy. Stefanie believes in the importance of developing treatment options for patients with rare diseases, and is inspired by the strength of patients and their often difficult journey to a diagnosis. As a member of the rareDIG, she hopes to encourage education of rare diseases in the medical research community using a collaborative outreach approach.
Sia is a first-year medical student at McGill University. He completed his bachelors in Neuroscience at the University of Winnipeg and is currently finishing a Master's degree at the Integrated program in Neuroscience. During his time in graduate school, Sia first became aware of the collective high prevalence of rare diseases and the lack of resources and support offered to patients and their loved ones. After hearing about RareDIG in his first-year medical class, Sia decided to join the newly formed research branch. With the advent of molecular genetic sequencing, rare diseases are being discovered and diagnosed at an unprecedented rate. Improving awareness of current rare disease science is pivotal to being able to provide accurate and timely diagnoses as well as propel the field forward with increased interest in rare research.
Senior Advisor & Co-Founder
Cyril is a fourth year medical student at McGill University. He holds a BSc and a MSc in physiotherapy from Université de Montréal. Being diagnosed with Hemophilia from birth, Cyril has always been in touch with the rare disease community. Being a rare patient himself, he wants to inspire the younger generations of patients with hemophilia to chase their dreams and live the life they choose which is why he is part of the Comité Jeunesse de la SCHQ where he organizes empowering activities and hemophilia awareness campaigns. Becoming one of the founding members of rareDIG, Cyril wants to improve quality and access to care for rare patients with rare diseases by encouraging medical professionals to adopt attitudes that will benefit patients with rare diseases and by raising awareness for those diseases.
Marie-Laurence is a first year medical student at McGill. She started being interested and involved in complex and rare disease during her Med-P year by being a caregiver for young children affected by rare genetic conditions such as Duchesne myelopathy, WAGR syndrome, fragile X syndrome, Coffin-Siris syndrome and spastic displasia cerebral palsy. It became clear to the lack of understanding of those diseases and how this impacts the patient and their family. As VP communication, Marie-Laurence will insure the promotion of events on our pages as well as publication of information regarding rare diseases.
Hongda is a first year medical student at McGill University. He completed the Med-p program prior to entering medical school. According to him, patients with rare disease often receive a sub-optimal quality of healthcare, and it is importance to raise awareness for those individuals. He joined the rareDIG group at the beginning of his Med-p program as VP junior. His current works consist of organizing events and running the rareDIG website.
Evan is a first year medical student at McGill University. He completed both his undergraduate and graduate degrees in Kinesiology at McGill before starting medical school. Evan has family members who went decades without knowing what rare disease they had. He understands that the journey that many people take can be a long and arduous process. Evan wants to raise awareness about rare diseases and how we can better support individuals in need.
VP Professional Development
Greg is a first year medical student at McGill. After finishing his Med-P year, he got interested in neurodegenerative disease research, specifically focusing a summer on Huntington’s disease, a rare genetic disorder presenting with motor and cognitive impairment. While reading about the condition, he discovered the unique characteristics of other rare diseases, the variable patient presentations, and the particularities associated with assigning a rare disease diagnosis. He hopes to, through the shadowing and mentorship program he will be working on with David and Santina, provide students with the opportunity to gain clinical experience in the field, fostering the development of well-equipped healthcare providers in the context of rare diseases.
VP Professional Development
Santina is a second year medical student at McGill University. She completed the Med-P program at McGill before entering medical school. RareDIG caught Santina's attention because she believes that everyone should have access to quality healthcare. She strives to raise awareness about the need to explore rare diseases, which, although individually uncommon, are frequently observed in the clinical setting. As VP of Professional Development, Santina will work with David and Gregory to host events that promote the rare disease community and the acquisition of rare disease knowledge.
Vice President Communications
Marie Picard is a third year medical student at McGill University. She completed her Bachelors in Biology from Université de Montréal prior to entering medical school. Being born with a congenital disease, she’s been in hospital a lot which lead her to really understand the journey of having a disease at a young age. It also made her understand the privilege that comes with being able to diagnose one’s condition and follow a treatment plan accordingly. She therefore joined rareDIG in hopes of helping people have a definite diagnosis by teaching medical student about those disease that are sometimes forgotten but could change the lives of many.
Vice President Communications
Lukas is a third year medical student at McGill University. He completed the Med-P program prior to entering medical school. Lukas believes that health and access to health are fundamental rights that everyone should have. He thinks that every patient deserves to know how a disease is affecting their body. Unfortunately, it is not always the case for patients with orphan diseases to obtain this information as research has not necessarily answered all these questions yet. Lukas had the chance to volunteer at Ste-Justine hospital where he interacted with multiple pediatric patients with rare diseases. These encounters have inspired him to advocate for patients, especially the ones with rare diseases. As a member of the Rare Disease Interest Group, Lukas wishes to spread the awareness of rare disease outside of McGill’s main campus, notably to McGill’s new campus in Gatineau.
Vice President Finance and Fundraising
Sam Psycharis is a second-year dental student at McGill University. He holds Bachelor’s degrees in Biology and Kinesiology from McGill. Throughout his education, Sam has held multiple roles in the Human Anatomy laboratories including working as a course assistant and lab demonstrator, teaching cadaveric dissection and prosection-based anatomy to students in medicine, dentistry, nursing, physiotherapy, etc. He got to connect with people affected by rare diseases early-on in his academic career, when he began volunteering to play classical guitar for patients and families across the MUHC. As a dental student, Sam is particularly interested in advocating for the numerous oral and craniofacial manifestations of rare diseases and their early diagnosis/management. He brings to the team years of experience in fundraising for non-profit initiatives on-campus, as the founder of McGill’s Walking Birds and the VP Finance of McGill Dentistry Gives Back.
Vice President Professional Development
David is a third-year medical student at McGill University. He entered the M.D.,C.M. program through the Med-P program after completing his CEGEP. The Rare Diseases Interest Group caught David’s attention because of his interest in medical education, as well as his fascination of the intricacies of the human body. Knowing personally individuals with rare diseases and having witnessed the impact of such conditions on their lives, David wishes to strengthen the awareness and the knowledge of rare diseases among his peers to better answer to the needs of this population. As VP of professional development, David is the liaison between various rare disease specialists, the students, and the Rare Disease Interest Group.