I've just come off the phone briefing (which was 20 minutes from the NIH, 40 mins Q&A, IIRC) as I was lucky enough to get one of the slots. The call was chaired by NIH Director Francis Collins, which I think shows serious committment from the NIH Overall, I was pretty impressed but unsurprisingly not everything is ideal, in my view. I'm sure other will be adding their views, but I need to rest. Generally, I thought the NIH sounded serious about listening to patients. I'm encouraged. I will write up some notes when I have the energy. I'm told the NIH will be releasing a recording to today's call 'soon', but waiting to here when that will be.