Yes. It's a dynamic we're quite familiar with.
As Mr. Edwards mentioned, people who have connections in the research community are able to find partners in the network of researchers working in another province as well as other families in the same situation. Solidarity between families whose members suffer from a rare disease is very important.
What is still missing is a clinical network. For people who are not in contact with research communities, it is difficult. They go to the hospital and they are alone, which is why the project we have proposed is important. It would make this link with a pan-Canadian and even international network, with other communities. In many cases, this solidarity extends beyond the country's borders.
Intervening with the diagnosis and knowing exactly what the disease is is already a step forward. In some cases, drugs exist, but in others they don't. Sometimes, the intervention may concern the nutritional aspect. There may also be situations where surgery is required. Drugs aren't necessarily prescribed in all cases.
Nevertheless, there is still no network between the so-called normal hospitals. People living near Sainte-Justine Hospital, CHEO or SickKids in Toronto may have an advantage, but it is still a problem in remote areas. That's why we are proposing that the clinical world do what has been successfully done in the research world.