I'm from Neurological Health Charities Canada, so I'm representing a number of organizations. Within our organizations, that type of direct service work absolutely happens.
It's not a rare condition, but an example I could give is the Alzheimer Society. If you're an adult diagnosed with any type of disease or rare disease, especially of a neurological type, all of a sudden your job is in jeopardy. Your ability to provide yourself with housing and your driver's licence are at risk. Transportation is a problem. It's not like being diagnosed with the chicken pox or a broken leg. It is going to be with you for the remainder of your life. A lot of the cases are degenerative, and it affects your life in a major way.
One thing the Alzheimer Society has is a program called first link. It's across Ontario, and now they're trying to expand it nationally. It's a connection between the organization and the diagnosing physician in most cases. Upon diagnosis, the family gives consent for their information to be sent to their local Alzheimer Society, and that's so it doesn't get to a crisis point. The person isn't left scrambling, trying to catch up with what's happening as the disease progresses. You get that support right away.
We see a lot of caregivers burning out. People are being dropped off in emergency rooms. Then we have this huge issue of people being admitted into hospitals and staying in hospitals when they don't need to be.
I would give that as one example.
In terms of the rare conditions, it's really difficult. The organizations are small and the funding base is small. These charities run mostly on donor dollars, and people donate because they're impacted personally by a condition.
As I said, it's a numbers game. When you don't have that many people who know about the disease, it becomes really difficult to get those types of services. It's often up to families, like the example I gave with Rett syndrome. The president of Rett Ontario is the mother of a 25-year-old daughter. She is trying to figure out who has it in her own community, how she can help them, and what they can learn from her experience. It's much more organic.
I'll give some time to Dr. Innes here.