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Sapropterin accessible to all age groups in Northern Ireland
?????????? The NHS in Northern Ireland has decided to allow prescribing of sapropterin (previously known as Kuvan) for responsive patients with PKU of all ages NSPKU is delighted to announce that the...
View ArticleAsk your MP to support people with PKU
Ask your MP to see NSPKU in Parliament. People living with PKU still need support for their rare condition. NSPKU will be holding a drop-in event in Parliament for MPs and their staff on Wednesday 13...
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NSPKU 51st Annual General Meeting (AGM) 2024
Notice of AGM NOTICE IS HEREBY GIVEN that the 51st ANNUAL GENERAL MEETING (AGM) of THE NATIONAL SOCIETY FOR PHENYLKETONURIA UK LIMITED (the ‘Company’) will be held at Chesford Grange Hotel, Kenilworth,...
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PKU “S.P.O.R.T PROJECT”
Annie Skidmore, PhD candidate at Birmingham City University, would like YOUR help! Annie’s research will include exploring experiences around PKU and physical activity/exercise from different...
View ArticleNSPKU Race to £10K
On Sunday the 15th September 2024 the PKU community will come together to take part in races around the UK to fundraise £10,000 for the NSPKU. Whether you are a gentle jogger or could give Mo Farah a...
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NSPKU Race to £10K – Runner spotlight
Ellie Carnell, aged 12, is signed up to run the Kelvingrove Park 5km in Glasgow. Ellie is one of only 3 people in Shetland with PKU and is excited to be involved in an event that she might meet other...
View ArticleDo you live in Scotland? Tell us about PKU Clinic Services in Scotland
NSPKU is collecting information about clinic services for PKU in Scotland. Here is a short survey where you can share your experiences and thoughts about clinic services in Scotland....
View ArticleCampaign for PKU – tell your MP about the impact of PKU
Our charity NSPKU has been campaigning in Parliament for understanding and support for PKU since 2017. This started by people living with PKU asking their MPs for help. We need to do this again and...
View ArticleSave the date – NSPKU Conference – 12 April 2025
Save the date – NSPKU Conference – 12 April 2025 NSPKU will be holding its Conference on Saturday 12 April 2025 at Glasgow Westerwood Spa & Golf Resort. Our Annual General Meeting will also be...
View ArticleIMPORTANT NOTICE – CHANGE OF ADDRESS
As from Monday 6th January 2025, the NSPKU’s new postal address will be; NSPKU (UK) Ltd PO Box 862 CHESTERFIELD S43 9FF The NSPKU’s website address, email address, and helpline telephone number remain...
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