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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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Category: News

Host your own 50th fundraiser for the NSPKU

23/03/202324/03/2023 Alison GreenLeave a Comment on Host your own 50th fundraiser for the NSPKU
News

Celebrating 50 Years & Counting!

18/03/202318/03/2023 Helena TraillLeave a Comment on Celebrating 50 Years & Counting!

NSPKU is celebrating its fiftieth year as an organisation focused on supporting people with PKU. We are using this landmark […]

News

Survey of Home monitoring for people with PKU who are 12 years old and over

06/02/202324/03/2023 Suzanne FordLeave a Comment on Survey of Home monitoring for people with PKU who are 12 years old and over

  Are you 12 years old or over and do you have PKU?  If so, please help us collect evidence […]

News

Survey on Home Monitoring for Parents of children with PKU up to 18 years old

06/02/202324/03/2023 Suzanne FordLeave a Comment on Survey on Home Monitoring for Parents of children with PKU up to 18 years old

  Are you a parent of a child up to the age of 18, who has PKU?  If so please […]

Children, News, Young people
Sapropterin picture

Sapropterin in Scotland

11/11/2022 kate learoydLeave a Comment on Sapropterin in Scotland

NHS Scotland allows prescribing of sapropterin (previously known as Kuvan) for PKU  NSPKU is delighted to announce that NHS Scotland […]

News

Open Letter to British Inherited Metabolic Diseases Group about Sapropterin Testing

04/11/202204/11/2022 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

Update on availability for sapropterin for PKU

17/12/2021 kate learoyd

  NHS England has today (17 December 2021) announced that it will make the medicine sapropterin for PKU available to […]

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

Questions and Answers about the NICE decision about Kuvan

25/02/2021 kate learoyd

Who is NICE and what are they doing?   NICE is the “National Institute for Health and Care Excellence”.  It […]

News

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

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Recent Posts

  • Host your own 50th fundraiser for the NSPKU
  • Celebrating 50 Years & Counting!
  • Survey of Home monitoring for people with PKU who are 12 years old and over
  • Survey on Home Monitoring for Parents of children with PKU up to 18 years old
  • Sapropterin in Scotland

Recent Comments

    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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    THE NATIONAL SOCIETY FOR PHENYLKETONURIA (UNITED KINGDOM) LIMITED is a charity
    registered with the Charity Commission (Company No. 01256124 Charity No. 273670 )