Of course having Azar as head of HHS probably isn't helping the matter.
Good point. Unless someone takes the responsibility to intervene on behalf of patients and their families we will make little/no progress on CNS disease causality.
When we see and hear the ridiculous (afterthought) FDA labeling claims approved for products in use which clearly have major adverse event issues. We can put a label on a pack of cigarettes that says..."Hey stupid...these things will kill you". That's OK I guess. Why can't system that allows that kind of BS w/a straight face also allow (risk clause contracts) w/patents such as RETT kids? Thankfully, I do not have to ask yet but if I did I would.
An intervention will be required to make serious progress on this. It could save time, money and lives if done correctly. The process to do that is already in place, IMO.
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