Hey There Mr. Learner - I have been trying to write this for...

Hey There Mr. Learner -

I have been trying to write this for days but haven't been able to finish it. So I will send as far as I have got below and get back to it later today -

My sincere apologies for taking so long to reply to your impression of the Rare Disease Day Webinar. I delayed responding as I needed some time space to try and get a clearer perspective.

I am very grateful to you for providing your thoughts about it, which was exactly what I needed, especially your picking up on the appearance of Dr. Woodcock and the significance of her expressions of support for patients organisations and natural history studies, which immediately brought home to me how easy it is to listen but not hear. I had watched the address by Dr. Woodcock, but must have been concentrating solely on looking rather than listening, as those words did not register with me at all ! Yet Pat Furlong and the PPMD are, as you wrote, really significant for us, and Panel 3 member Dr. Johnsons' report all on the effects of the COVID-9 requirements on a major natural history study he had just commenced when the crisis erupted. You are spot on there.

I think we are in agreement about the panel 3 presentations - in the overall sense, after also having a go at panels 1 & 2, I think it is a very thorough, frank and impressive public report on the effects that having to cope with the COVID-19 crisis have had on the workload of the Rare Disease Divisions of the FDA so far (in that it is not over yet).

As you know I sent some info to Wayne a little while ago on some of the specific points covered by the panel 2 speakers and I have some more that I'll get to later, but I have something regarding your concern about the press coverage to raise first. I read the exchanges you have had with several posters that concluded with your agreeing with Itsa to stop harping about it, but I don't think you will stop thinking about it. Reminds me of that old joke about the chap who, having been issued with speeding fine, responded to the officer asking him if he had anything to say about it with "I don't have anything to say sir, but I can tell you what I think - I think you are a xxxxxxx xxxx"

Like you and quite a number of posters I believe the company has got what they are claiming, and am totally impressed by the planning and preparations they have been making over the last year or so, and with the appreciation in the share price during that time. But there are still things that crop up from time to time that seem odd, unclear, out of place or regurgitative (e.g. the SP falling after an excellent announcement) and which create doubts that we don't want to have. I am just trying to refer back to company announcements to try and get as clear a definition as possible of what they are informing us.

I also believe that this forum is an appropriate venue to share our views on these, and that the company not only has a duty to listen to shareholders views, but also should welcome their constructive suggestions. In respect of your (gagged) concerns, there have been 3 relatively recent announcements about the shares that were issued in lieu of cash payments to get the publicity going which I'm checking

to be continued