Hi all - today for me is very sad day, being parent of a girl with Retts and being a shareholder...
BUT I am trying to get to grips with this news - and I am by nature an optimist
So - my silver lining to all this is that we STILL have this medicine for our girls (it hasnt disappeared!) and it STILL gives me hope to the future (I have to have hope - there isn't any other drug presently available)
I will stick to Neuren - not for sentimental reasons - as I believe they can eventually reapply to FDA albeit after more waiting....
P.S. I have checked the European Medical Agency for any signs of OD status for Trof - but it isn't showing anywhere, if this was passed there would be another silver lining...
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