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Category: News

Family Conference 2022 – Save the Date!

24/04/202224/04/2022 Iain Williamson

  Dates for the 2022 NSPKU Family Conference have now been agreed – Friday 30th September to Sunday 2nd October […]

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

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

Branded Exchange Free Food List

05/05/202005/05/2020 Suzanne Ford

Click here to down load the list:  NSPKU_Branded_Exchange-free_A4_5     This is a list giving examples of foods in 20 […]

News, Diet
NHS

NSPKU guidance re Coronavirus (COVID-19)

13/03/202027/03/2020 kate learoyd

CONSIDERATIONS FOR PEOPLE LIVING WITH PKU People living with PKU may be concerned about the impact of Coronavirus (COVID-19) and […]

Adult, Children, Diet, News

Recent Posts

  • Family Conference 2022 – Save the Date!
  • 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

Recent Comments

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