Rare Diseases

Approved but denied: Canadians with neuromuscular diseases face unequal access to treatment

We are told health care in Canada is equal for everyone. But it is not. Particularly for patients with neuromuscular diseases, what you get depends on where you live.

Along with millions of others, I live with MCAS. There is an urgent need for research and support

"Mast Cell Activation Syndrome (MCAS) is a debilitating and often misunderstood condition. As someone living with MCAS, I have firsthand experience of its profound impact on daily life and the urgent need for greater awareness, research and funding."

‘I’m proud of how far I’ve come’: Using sports to overcome mental, physical challenges

"I went from not wanting to be an amputee to really appreciating that I am an amputee. I take pride in the things that it has allowed me to do – travelled the world on the national para-ski racing team and public speaking."

‘Cure sometimes, treat often, comfort always’: The importance of support networks

Brent Leonard poignantly describes the isolation of having an extremely rare, terminal illness to suggest that human connection may be the best solace for those whose conditions cannot be understood by medicine—let alone cured.

Can healthcare do better for people with multiple chemical sensitivities?

When it’s a zebra: Does Canada need a rare disease strategy?

Prostatectomy, pharmacare, and protein mutations