Rare Disease Day

On Rare Disease Day, we invite the Massey community to join us for a thoughtful Fireside Chat. Our guests will share brief reflections from their respective perspectives on rare disease, considering how we might move beyond individual diagnoses to understand rare diseases as a diverse yet interconnected community shaped by shared experiences. The conversation will also examine some of the most urgent challenges facing this space today.

We hope this gathering will deepen awareness and foster meaningful dialogue around the reality that 1 in 12 Canadians live with a rare disease.

Moderator: 

Micaela Forte is a PhD student in the Social and Behavioural Health Sciences program at the Dalla Lana School of Public Health and a Research Placement Student at CAMH. She completed both her undergraduate degree in Health Sciences and her MSc in Health and Rehabilitation Sciences at Western University, where she was also an active member of the Rotman Institute of Philosophy. Micaela’s master’s research explored the ethical intricacies surrounding children’s medical decisions, focusing on the tensions
between children’s best interests, parental authority, and the role of healthcare providers in guiding treatment choices. This led her to U of T and CAMH, where she continues to explore how ethical frameworks can be applied to improve mental health outcomes for children and youth, while also addressing systemic challenges in public health ethics. Outside of academics, Micaela enjoys trying new recipes, attending workout classes, and travelling to new places around the world.

Panelists:

Ian Stedman is an Associate Professor in the School of Public Policy and Administration at York University. He also holds the York University research chair in Law, Policy and Personalized Healthcare. Diagnosed with Muckle Wells Syndrome in 2012, Ian is a rare disease patient, parent, and advocate. Having formerly served as a board member of the Canadian Organization for Rare Disorders (CORD), Ian now serves as the board chair for the Canadian Autoinflammatory Network / Réseau Auto-inflammatoire Canadien, is a legal member of the research ethics board at SickKids Hospital in Toronto, and leads the patient partnership working group for the Pan-Canadian Genome Library. He is also Chair of the Advisory Board for the CIHR Institute of Genetics.

Lindy Forte is a Senior Vice President of Market Access & Pricing at EVERSANA Canada. She specializes in reimbursement of drugs for rare disease. She previously served as Division Head for Market Access and Pricing and Senior Partner in Market Access & Scientific Affairs at Accelera Canada from May 2017 to July 2021. Additionally, Lindy was a Principal Consultant at Patient Access Solutions (PAS) from 2013 to July 2021, as well as at VALORE Consulting from 2005 to 2014.

Mai Kondo is a graduate student in the Institute of Medical Science at the University of Toronto, conducting patient- and caregiver-centered qualitative research within the Department of Supportive Care at Princess Margaret Cancer Centre. With a background in Psychology and Bioethics, she is passionate about exploring the psychosocial experiences of individuals with chronic and life-limiting illnesses and strives to bridge gaps in care, support, and knowledge for vulnerable populations. As a person with a disability, Mai is a strong advocate for equity, diversity, and inclusion (EDI), actively working to foster more accessible and supportive spaces in academia, residence, healthcare, and beyond.

Catherine Stratton is an Epidemiology PhD candidate at the Dalla Lana School of Public Health. She is a recipient of the Canadian Institutes of Health Research Canada Graduate Scholarship Doctoral Award and the Pierre Elliott Trudeau Foundation Doctoral Scholarship. Catherine’s research focuses on improving the methods for developing, implementing, and utilizing rare disease patient registries.