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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

What does the NSPKU do?

29/02/202420/03/2026

Sapropterin accessible to all age groups in Northern Ireland

17/01/202420/03/2026

The NHS in Northern Ireland has decided to allow prescribing of sapropterin (previously known as Kuvan) for responsive patients with […]

NSPKU Conference 2024

12/01/202420/03/2026

Watch our 50th film here

15/12/202303/07/2024



NSPKU Call for Action

12/12/202320/03/2026

 

Celebrating 50 Years & Counting!

18/03/202320/03/2026

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

Sapropterin in Scotland

11/11/202220/03/2026

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

Open Letter to British Inherited Metabolic Diseases Group about Sapropterin Testing

04/11/202220/03/2026

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

Update on availability for sapropterin for PKU

17/12/202120/03/2026

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

Information on NICE Kuvan Decision

20/08/202120/03/2026

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

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Recent Posts

  • Join Us for International PKU Day 2026!
  • Celebrate PKU day with our new colouring sheet!
  • Write to your MP – ask for their support for fair treatment for PKU
  • Save the Date: Northern Ireland Day Conference 17th October 2026
  • Don’t forget to take part in our surveys

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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