“A lung transplant is not a cure. It is a life-saving treatment.”
We cannot forget the people who are living with CF today. We need to support current patients, improve access to life-changing medications, and ensure earlier diagnosis.
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Behind every statistic, a person.
These are the voices reshaping Ontario's approach to rare disease — patients and caregivers sharing what they wish they had known.
“It took 18 years to receive a diagnosis. And the diagnosis didn’t unlock care.”
Because rare does not mean invisible. Ontario can do better. And for families like ours, it must.
A symptom she mistook for perimenopause turned out to be a rare blood cancer.
Rare disease journeys are often lifelong, but no one should have to navigate them alone.
Her greatest challenge today is not her career — it is her sight.
Sickle cell is unpredictable and relentless. It does not just cause pain — it takes independence, stability, and certainty about the future.
Two of her sons were diagnosed with a rare genetic disease — so she built the support she wished they'd had.
Because every family deserves support from day one.
“It's the only lifesaving option at this point.”
There is so much more we can do to better diagnose and treat the 1 in 12 Ontarians who live with a rare disease.
Caregiver and Sickle Cell Global in Leader Advocacy
To ensure that no patient is left behind in Canada - or anywhere in the world.
Ruchi chose to turn her journey into purpose.
Ruchi’s story is one of resilience, advocacy, and hope — but it’s also a reminder that more awareness, support, and action are urgently needed.