ok - you[the forum] have lots of good ideas. so now i'm going to point out what some others have been doing all along, it's time for closure, to drop patient competition and lack of support. patient cliques in the orgs, and on and on. i'm going to share when i see something that i know to be attended by pipeliners or other real pwp without org sponsorship,

This meeting should be very intersting Two pipeliners, with the help of other pipeliners researching and pulling the information together into a backgrounder [two members are college librarians ] will be attending this meeting. They are FDA consultants and have much knowledge, but patients are often used for window dressing. These guys know their stuff and the institution.

Lack of usage of patient advisory committees is not acceptable in the online world. i am writing the book partly to tell the story of some silent warriors, who faithfully workd for the cause for no rewards.

Honest, loyal, . new groups have some big shoes to fill. This isn't criticism; it's a challenge, I wish you victory, but i'm going to point out just what has been done or is being done as an educational legacy.

Also, pdf has a training institute for patient advocates, an idea formed in part by ronnie t at pdf after attending a weekend with pipeliners to plan for the year.

paula

that's a teaser and another tally on the side of writing the book. debi, i will be emailing shortly about this book I think you will truly appreciate the angle and it does include mike, but in a very good way. this is positve. i'm hoping that you can trust us with the story. We lived this atory and it isn't over yet.

meanwhile, good luck with cere-120 and don't miss this significant webcast.

Tony and Arnie, if they are seen at all, are pipeliners.