No one should face rare alone.
A coalition of patients, caregivers and clinicians building a more humane rare-disease system for Ontario.
An Ontario non-profit network of patients, families and clinicians, working to shape provincial policy and build a system that sees rare patients.
Everything we do, in one place.
Each section below has its own page with the full picture — open any one to dive in.
What we are fighting for at Queen's Park.
Six provincial commitments — strategy, faster diagnosis, drug access, caregiver supports, multidisciplinary care, research investment.
The realities families face every day.
Five-year diagnostic odysseys, geographic inequity, caregiver burnout — the system was not built for the rare community.
Patients, caregivers and clinicians, in their own words.
Behind every statistic is a person. The patients and caregivers reshaping Ontario's approach to rare disease.
Town halls, briefings & meetups — most on Zoom.
Register for upcoming sessions and join the conversation from anywhere in Ontario.
Our work, covered in the news.
Articles, interviews and podcast appearances featuring the rare-disease community we advocate for.
The rare-disease organizations we work alongside.
Patient organizations from across Canada and Ontario, each bringing deep expertise in their condition — we don't do this work alone.
Have a question? A story? A rare idea?
We read every message. Whether you're a patient, caregiver, clinician, policymaker — start a conversation.
contact@ontariorare.caStay in the loop
Occasional updates only — event invites, policy news, and the stories that matter. No spam, ever.