Tom - welcome!

Your comments are insightful. I do believe you are right that the fractionalized nature of the U.S. PD establishment fosters patient discontent because it has become too easy for one org to say, "we don't provide that service - they do," and, when questioned, the "they do" org says, "no we don't!", and so whatever that unmet service or need is just slides into the space between.

I think your idea of a global patient database is a good start and doable. We already have established a good working relationship with UK patients, as you know so well, and our needs, complaints, and challenges easily cross borders.

This is also a movement that can happen separately and independently from the U.S. patient desire to see a unified PD organization. They really are two different issues that have become a bit mixed up in this thread. Unification is only one area that concerns the U.S. patient; there are other issues, as you stated (GDNF, speed of clinical trials, side effects of drugs etc) where a strong, independent patient voice is required.

The next PD World Congress is occurring in Glasgow, September 2010 (you are on the organizing committee, yes?). Perhaps that would be a grand occasion for a patient meeting, giving us 2 years to organize?

So glad to see you here!