Absolutely, Orphanet is primarily an information portal. That's its major purpose.
There is both national-specific content and international or global content. The international global content is out of my control. That's not to say that I or any other interested Canadian couldn't advise them and say that some disease information looks out of date, or to add this disease or that disease, but that's well organized at a higher level and they constantly curate that information on rare diseases.
For Orphanet Canada, we can do a few things. One, we use the site to advertise activities around rare disease. That can be presentations, café scientifiques, research projects, and announcements. When the minister made an announcement about orphan drugs, we viewed that as a way to get that information out to people.
Also, one of my main jobs as national coordinator is to curate information about the support groups and the clinics that exist. I have a small nucleus, my scientific advisory committee. We need to make sure that information is accurate. It's not enough for a doctor to say, “I'm an expert in that condition.” It's not my job to comment necessarily on the competencies of every physician, but we need to at least make sure that this is true, that this is a safe study, and this is safe information. We look at that and we want to get as many organizations out there as possible, but it needs to be safe.
Basically we're looking at constantly curating that information to make sure it's up to date about what research, what projects, and what registries are happening in Canada.