I was looking to see how much awareness there is of Trofinetide/ Neuren here in the UK. Not much!
There are a few locally based support groups on Facebook, a quick search didn’t show any mention of Trofinetide. The 2 main organisations seem to be Reverse Rett and Rett UK.
Reverse Rett seems to have close links with Neurogene and their genetic research. They do refer to the Rett Syndrome Research Trust, which has a negative and to my mind misleading appraisal of Trofinetide https://www.reverserett.org.uk/daybue-trofinetide-facts-for-parents/.
Rett UK has an outdated review of treatments, mainly related to cannabinol.
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The NHS website, in its Retts section, has no mention of treatments.
There may be more but I couldn’t find it. I guess that Acadia’s involvement with the US Retts community paved the way for early take up in the US but whoever takes Trofinetide forward in UK will have some work to catch up.
Daybue Rollout, page-51
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