Lindylanka. I would very much like to speak to you. I am not saying that we (as the rest of the world) split from the US - quite the contrary. The database needs to be global - that was the original concept. Nor was I saying that there are no advocates anywhere else but the US - I was merely saying there was greater depth on this forum of Americans which made their decision making process more difficult than ours.
I hope we can speak so that I can arrest your fears here - back me up here guys! I would also like to enlist your help.
I am already planning the Rest of the World Database (which clearly needs to be established and run outside the US and then linked back in). SuffolkChris has agreed to be involved and I am looking for independent funding. I will also be asking the EPDA Board, of which I am part if I can approach all the European PD organisations for their support to advertise this initiative.
If you think about it all PD orgs should support this venture. It is absolutely in line with current best practice and if we get it right with the Mission Statement (good idea) and we ensure that the whole thing is organised and delivered with structure and credibility - then really everyone should support us in this venture.
The best way to motivate patients is through other patients
The most powerful voice in health is that of the patients
The way to increase the profile of any conditiion is through the patients.

We are not a threat to patient organisations with this database - we are potentially a huge asset. BUT we have to get it right.

Carey - can we speak too. I would like to talk through the WPC piece with you.

Tom