These are fair questions. I think each organization has to do what they think they can do to help.
Given our current funding and mandate and time, it's not Orphanet's job per se, or mandate, to itemize the number of patients with this disease or that disease, but to facilitate the existence of those registries and to connect the patients with the stakeholders. We are not in a position to maintain registries for 7,000 rare diseases.
I think what we need to think about for those things, and I talked briefly about the International Rare Diseases Research Consortium, IRDiRC, of which Canada is a major partner.... It's a little bit a side of Orphanet, although there are clearly places where these things interdigitate. They had their first meeting in Dublin, which I attended. I'm part of the working group on registries. I think we need global registries on rare diseases, but probably those registries don't contain very much information, the basics: name, gender, a way to identify those people, make sure the diagnosis is correct, so if there are new treatment trials, those people are findable. Then I think it may be up to local groups, local charities, local governments, or provinces to keep whatever deeper data they're able to curate and manage.
Maintaining databases is pretty labour intensive, and I'm not an expert in it, but unless you're able to maintain and constantly update it, you maybe shouldn't get into that business.