Rick,

I imagine some will race to answer this one or else run the other way. The orgs are caught in the middle of a changing world where patients were largely excluded. Their boards can tie their hands. Once again, it depends on who the group is who is appealing for help - if it's not a popular one, the group will be ignored.

Just think on this a moment - none of the PD orgs acknowledge Monkeys in the Middle - who are they afraid of offending?

The orgs are changing and becoming more patient oriented. But you can see by what they ask of patients that they don't completely understand the illness. And gobs of their money also comes from pharmas and biotechs.

paula