from pipeline email:

http://bulletin.sciencebusiness.net/...-of-innovation

This is encouraging indeed. At the very least the principle of patient participation is being recognized.

Wow !! great article - very cool that MJFF and PAN are cited as examples of patient-involved innovation.

I really like the message in the final paragraph; makes me happy that we've continued to speak up all these years:

"Clearly, it is unacceptable that these insights gather dust while people wait for treatments. The thought that the mechanism underlying their diseases is known but nothing is being done to act on this understanding will continue to energise patients’ groups, providing inspiration and a spur for innovation".

NOTHING ABOUT US, WITHOUT US

This article reminded me about that statement. It is not a slogan, it is not a request, it is instructions, a direct order, a statement of position, saying precisely the way it has to be.
The recent example of the "global sinemet shortage" where a pill that has been used for 50 years suddenly falls out of production, and we are not permitted the slightest shred of information, even though the drug exists only because of our disease.
And the towering example, the AMGEN GDNF fiasco, where everything was done without us (and yes, we have looked at "all sides of the question" and there was one group that was extremely right and another group that was extremely wrong. I don't mean shades of grey, I mean the most primitive tribesman stumbling out of the wilderness and knowing nothing about our society would take one look at the GDNF fiasco and say : that is wrong.)

It is up to the patients to start standing up for themselves; and the method or the spirit of research must move in a new direction, as portrayed in this excellent article that Paula discovered and brought to us.
Nothing about us, without us.