Raising Awareness of Rare Diseases

Today I had the privilege to rise in the House to recognize those Canadians who are affected by rare diseases.

“Mr. Speaker, later this month on February 29 we will mark Rare Disease Day.

The day raises awareness of the estimated 2.7 million Canadians directly affected by over 6,000 rare diseases and disorders. That’s roughly one out of every twelve persons.

75% of these diseases affect children, and 30% of those affected will die before their 5th birthday.

Speaking on behalf of a family impacted by a rare disease called Alport Syndrome, a rare genetic condition which leads to a loss of hearing and eventually kidney failure; I have seen first-hand the impact a rare disease can have on a family. I know the helplessness and the worry a parent feels when facing an incurable condition affecting their child.

I want to thank the medical professionals and researchers who everyday assist those affected by rare diseases and disorders. On February 29, I will join those making the voice of patients and families affected by rare diseases heard.”