For some reason, I find this lesser (or lack of) awareness of Rett Syndrome in the UK unsurprising.
Having worked in the UK in the healthcare field for a number of years, the system is limited by budget and therefore detection of rare conditions isn't as frequent compared to the US (in my opinion). I imagine that referrals wouldn't be as easy due to the public system being utilised by most of the UK population with a small minority using private healthcare, and again the budget limitation prevents patients from quicker follow ups and additional diagnostics as quick as they would want to. In addition, the population density in the UK makes it even more challenging to attend to all potential patients.
In some ways, this puts the US healthcare system (again, in my opinion) in a better light in terms of diagnosing and managing rare conditions like Rett. Happy to be corrected in my stance here.
Ironically, I found the UK healthcare system more "behavioural" in their approach to patients, and one might be led to think that "Hey if it's more behavioural, then shouldn't that lead to more diagnoses and awareness for a condition like Rett?". Unfortunately, as in many complex systems such as healthcare, it is multifactorial and therefore isn't as straightforward to deal with.
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