1.3 million Ontarians. Thousands of rare diseases. One collective voice.
For 1.3 million Ontarians living with a rare disease, the journey can be filled with uncertainty — waiting for a diagnosis, searching for answers, fighting for care and hoping that the treatment they need will be within reach. We believe it can be different.
What if we could change the next rare disease story?
For OntarioRare co-founders Beth Vanstone and Alice Williams, this is more than advocacy. It is personal.
Beth watched her daughter, Madi, grow up with Cystic Fibrosis and experienced firsthand the extraordinary difference that medical innovation can make — and the frustration when a life-changing treatment is approved but still out of reach.
Alice’s two children have Wilson disease. Her daughter’s disease was discovered only after she experienced acute liver failure and needed a life-saving liver transplant. Her son was diagnosed only because his sister’s diagnosis revealed the family’s genetic condition.
Their experiences led to one powerful question:
What if the family that comes next could have a different story?
That question became OntarioRare.
A voice for Ontario’s rare disease community.
Rare diseases may be individually rare, but together they affect an estimated 1.3 million Ontarians.
Across the province, patients and families are waiting — for answers, for specialists, for treatments, for hope.
OntarioRare brings these voices together to advocate for a better, more coordinated rare disease system in Ontario.
We believe patients and families must have a seat at the table alongside researchers, clinicians, policymakers and the life sciences community.
Because a breakthrough means little if a patient cannot access it.
A diagnosis means little if it comes too late.
And innovation reaches its true potential only when it changes someone's life.
Ontario has the research, expertise, innovation and talent to become a leader in rare disease care.
Now we need to bring it together.
Together, we can change the next rare disease story.
OntarioRare is building a stronger collective voice for rare disease patients and families — advocating for earlier diagnosis, better care, more research, improved access to treatments and a provincial rare disease strategy shaped by the people who live this reality every day.
We cannot change what happened to our families.
But together, we can change what happens to the family that comes next.
1.3 million people. Thousands of rare diseases. One collective voice.
Want to be part of this?
We are stronger together. Reach out and join the movement.