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home the national society for phenylketonuria nspku skip to content helpline 030 3040 1090 celebrating 50 years and counting facebook twitter instagrame the national society for phenylketonuria nspku nspku is the only uk charity dedicated to improving the lives of people living with the rare condition pku our goal is to support individuals and families living with phenylketonuria across the uk menu menu home about pku living with pku throughout life new diagnosis of pku during childhood as a teenager or young adult as an adult during and after pregnancy advice and guidance school and nursery holidays and travel living with pku claiming benefits blood test advice carers of people with pku faq s treatments clinical centres for pku dietary information non dietary treatments untreated or late treated pku other information useful documents useful links get involved membership nspku conference future events campaign support us research disorder management new treatments diet guidelines pku in adults maternal pku nspku research about us about nspku our work history of nspku our team grant fund patient experiences documents news contact us general enquiries emergency contacts council of management nspku is the only uk charity dedicated to improving the lives of people living with the rare condition pku about us the nspku is proud of its history and we look forward to the future continuing to support people living in the uk with pku find out more we understand how important it is for youngsters to make friends and share experiences with others like themselves find out more the nspku relies on fundraising to support the work we do find out more the national society for phenylketonuria nspku was founded in 1973 as the national charity for people living with the rare metabolic condition phenylketonuria pku learn more about what we do and how you can support our work find out more about nspku helpline 030 3040 1090 calls to the above numbers are charged at standard geographic rate call me back alternatively click call me back and we will call you back at no charge https www youtube com watch v qalzcbvynxu new diagnosis we have information for parents and families who have received a new diagnosis of pku for their baby if you would like to talk to someone call our helpline on 03030401090 or send an email to info nspku org find out more about a new diagnosis here phenylketonuria pku is a rare metabolic disorder people with pku cannot metabolise phenylalanine an amino acid found in protein foods more about pku share pku dietary updates along with news research and advice articles pku dietary updates and news nspku is supported by our members and fundraisers you can join nspku to support our work and join our community support nspku in 2016 we launched our call for action campaign to improve the lives of people living with pku more about campaigning nspku 50th annual conference and agm 2024 ask your mp to support people with pku what does the nspku do sapropterin accessible to all age groups in northern ireland nspku conference 2024 watch our 50th film here nspku call for action agm 2023 host your own 50th fundraiser for the nspku celebrating 50 years counting sapropterin in scotland open letter to british inherited metabolic diseases group about sapropterin testing update on palynziq pegvaliase for pku update on availability for sapropterin for pku information on nice kuvan decision questions and answers about the nice decision about kuvan nspku survey for children with pku aged 18 or under for carer parent to complete nspku survey for people with pku aged over 18 sheila unlocking the treatment for pku orders outside the uk book launch sheila unlocking the treatment for pku uk orders for more information use our contact page or helpline 030 3040 1090 for pku unplanned pregnancy emergency advice please contact your local centre you can also use our documents library to access lots of important information copyright 2024 the national society for phenylketonuria nspku design by nooh studio privacy policy terms conditions cookie notification the national society for phenylketonuria united kingdom limited is a charity registered with the charity commission company no 01256124 charity no 273670
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