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The National Society for Phenylketonuria (NSPKU)

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.

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Author: Suzanne Ford

Price of Stamps in PKU – OfCom Interviews

15/04/2025 Suzanne FordLeave a Comment on Price of Stamps in PKU – OfCom Interviews

Postage & PKU Are you living with PKU and can you take part in an online one to one interview […]

News

PKU “S.P.O.R.T PROJECT”

18/06/202427/06/2024 Suzanne FordLeave a Comment on 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 […]

News

Sapropterin accessible to all age groups in Northern Ireland

17/01/202422/01/2024 Suzanne FordLeave a Comment on 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 […]

News

Open Letter to British Inherited Metabolic Diseases Group about Sapropterin Testing

04/11/202230/03/2023 Suzanne FordLeave a Comment on Open Letter to British Inherited Metabolic Diseases Group about Sapropterin Testing

The NSPKU is requesting a review of the sapropterin testing pathway for people with PKU in England and we have […]

News

Information on NICE Kuvan Decision

20/08/202123/08/2021 Suzanne Ford

  NICE recommendations about sapropterin (Kuvan). What they mean for patients with PKU:   Who is NICE and what has […]

News, Adult, Campaign, Children

NSPKU Survey for children with PKU aged 18 or under (for carer/parent to complete)

10/02/202110/02/2021 Suzanne Ford

This survey is for children aged 18 or under (the carer/parent or guardian to complete) and the survey is about […]

News, Children, Diet, Young people

NSPKU Survey for people with PKU aged over 18

10/02/202110/02/2021 Suzanne Ford

This survey is for everyone with PKU aged over 18 (or their carers, parent or family member) and the survey […]

Adult, Diet, News, Young people

Sheila – Unlocking the Treatment for PKU – Orders outside the UK

13/10/2020 Suzanne Ford

In 1951, Sheila Jones was the first person in the world to be treated for Phenylketonuria (PKU) at Birmingham Children’s […]

News

Book Launch! Sheila – Unlocking the treatment for PKU – UK orders

12/10/2020 Suzanne Ford

In 1951, Sheila Jones was the first person in the world to be treated for Phenylketonuria (PKU) at Birmingham Children’s […]

News

PKU Baking: overcoming guilt or fear of failure…. a blog by Clair

22/07/202022/07/2020 Suzanne Ford

PKU Baking… overcoming guilt or fear of failure: Following on from my blog about cooking….baking is also something I was […]

Adult, Diet, Young people

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Recent Posts

  • Price of Stamps in PKU – OfCom Interviews
  • NSPKU Scotland Conference 2025 – Our supporters
  • NSPKU Scotland Conference 2025 – Ceilidh
  • NSPKU Scotland Conference 2025
  • IMPORTANT NOTICE – CHANGE OF ADDRESS

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    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

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