Mr. Speaker, Rare Disease Day came and went on February 29, the rarest day of all. This year's theme is, “Rare is many worldwide. Rare is strong every day. Rare is proud everywhere.” Millions of Canadians, two-thirds of them children, are affected by one of over 7,000 rare diseases. Only one in three of these Canadians can access needed treatments.
The hardest experience as a father is to care for a loved one with an incurable condition. My three oldest kids suffer from the rare kidney disorder called Alport syndrome, which is incurable, genetic and degenerative. My youngest daughter passed away two years ago from Patau syndrome and no day goes by without me thinking of her.
I join patients across the country to call on the federal government to abandon the changes to the PMPRB, go back to patient stakeholders and work out a solution that makes access to treatments the first and most important value, instead of price controls that block access to medication.
I invite all members to join me to celebrate Rare Disease Day.