What an excellent initiative we see bubbling up here. We do have access to the AVXL homepage. Perhaps we could persuade them to post these videos and other validated A2-73 notes, anecdotes are fine as long as we can somehow verify and validate their authenticity.
We do have some ref where we can use FDA RWD-RWE guidelines. We are smart enough to convert anecdotes into verifiable objective evidence by following a few simple rules.
I would also add to your thought: "if not now, then when?", "If not us, then who?"
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