Thank you, Madam Chair.
Normally, when I take the floor at Standing Committee on Health meetings, I focus on issues of national scope. However, since we are talking about rare diseases, it is appropriate to also discuss individual cases.
In the municipality of Sainte-Rose-du-Nord, which is in my riding, there was a little boy named Miro Angers-Laurin. He had a rare disease called diffuse intrinsic pontine glioma. Only one or two such cases are detected annually in Quebec.
When the diagnosis was made, the child had only nine months left to live. Miro's family, which I know very well, decided to spend those nine months granting him all his wishes. That was a nice thing to do, but, during that time, they refused to allow therapeutic trials that had been proposed because they were not very conclusive.
Afterwards, they founded the MIRO foundation. That organization feels that it would be important to create and implement an international registry in order to learn more about that tumour and encourage research, since there aren't many such cases in Canada and the world.
We can also draw a parallel with other rare diseases. Would Health Canada be prepared to support that kind of initiative and collaboration? Dr. Wong-Rieger said that it would be important for Canada to become a leader in the area of rare diseases. The government would show leadership by working with our other international colleagues.
As a Health Canada representative, what do you think?