Community Discussion Forum Adults and PKU Any1 from australia and in their 20’s with PKU? Reply To: Any1 from australia and in their 20’s with PKU?

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Hi everyone,

I'm 26 with PKU and I live in Melbourne.

I was at my PKU clinic last week and I asked my PKU doctor about Kuvan coming to Australia. She told me that they would absolutely and positively not be bringing Kuvan or any LNAA treatments like PheBloc, NeoPhe etc to Australia, ever.

The reason cited for this is that PKU is easily managed with a low protein diet and that any additional treatment to that isn't necessary.

I'm pretty furious about this and am hoping to campaign against this belief. For that reason I would be very, very interested to hear what other people's PKU clinics have said – please feel free to message me about this – both with any info you have and also if you would like to be a part of the fight to get Kuvan and other treatments to Australia!

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