Mr. Speaker, Duchenne muscular dystrophy, Phelan-McDermid syndrome, mutation of the Spatton One gene, these, like many others, are rare diseases. By definition, each one of them affects fewer than one in 2000 individuals, but those individuals have names, like Jesse, Lorena and Isabella.
My own nephew Ethan lives with ATRX syndrome, one of less than 200 in the world afflicted. Today, on this 12th annual Rare Disease Day, I rise to celebrate his journey through life and his accomplishments, no matter how seemingly small.
I would also like to acknowledge the caregivers of those with rare diseases, including my sister-in-law Kathryn and my brother-in-law Chris, who is a rare disease board member.
I applaud their sacrifices, their resilience and their efforts to raise awareness, despite constant challenges and unforeseen circumstances.
I call on all my colleagues and all Canadians to continue to promote awareness, today and each and every day, about people with rare diseases, their caregivers and their advocates.