In your presentation, Dr. Wong-Rieger, you talked about kitchen table organizations, and I immediately thought of an organization in my riding of London North Centre, Bethanys Hope Foundation. You are nodding your head yes, so I imagine you know Dave and Lindey McIntyre very well. They have been active for the past 20 years, after losing their little girl, Bethany. She was seven years old when she passed. They have raised $4 million for research, and they continue to work very hard on this.
Can you tell me about the experience of organizations like this, families who are trying to raise funds and awareness, and trying to access treatment for their suffering loved ones?
The system—from reading the briefing notes for today, and knowing a little bit about the travails of families who experience rare diseases—seems very bureaucratic in Canada. It is a patchwork quilt.
Could you tell me about best practices from other jurisdictions? I know there is NORD, the North American organization, your counterpart, which looks at rare diseases on a North American level. You talked about the Orphan Drug Act in the United States. You talked about the European experience.
Are there other lessons to be learned there for Canada and Canadian policy-makers trying to deal with this question of rare diseases, either from the EU or the United States? We are talking about a national pharmacare plan. Rare diseases can be dealt with in a national pharmacare plan, I would expect, but do you have any ideas on that?