News

Dietary Information

Announcements relating to dietary products.

Events

Upcoming events from the society and its friends

Publications

News about new and updated publications

General

Other news relating to PKU.
Christmas 2018: Low Protein Goodies
Posted Tuesday 4th December 2018
Special thanks to "Team Birmingham" for creating and sharing their annual Christmas Low Protein Goodies list. This bumper 38...Read More
Westminster Hall Debate
Posted Thursday 15th November 2018
Access to treatment, support and innovative new medicines for phenylketonuria patients was debated in the House of Commons on Tuesday...Read More
NSPKU Survey results - second paper
Posted Friday 2nd November 2018
The second peer reviewed paper with results from the NSPKU survey has now been published. An additional section of the survey asked nine...Read More
NSPKU Survey... the results
Posted Thursday 25th October 2018
The first peer reviewed paper reporting the results of the NSPKU survey findings for children and adults with PKU has now been...Read More
How do you see the future in terms of treatment for PKU?
Posted Monday 8th October 2018
Dietitian and PKU Guidelines Co-ordinator, Annemiek Van Wegberg from The Netherlands, has produced a European questionnaire looking at...Read More
NSPKU statement on NHS England draft interim Kuvan policy
Posted Tuesday 2nd October 2018
NHS England has prepared a draft interim policy for the use of sapropterin (Kuvan) for PKU. The policy is likely to be considered by NHS...Read More
32nd ESPKU Conference, November 2018
Posted Tuesday 11th September 2018
Hosted by one of it’s member countries the ESPKU Annual Conference is the largest event of the year combining three different...Read More
The legacy of Professor Horst Bickel
Posted Monday 3rd September 2018
A life of courage for lives with hope. The legacy of Professor Horst Bickel. The past, present and future of PKU...Read More
NSPKU statement on the use of Kuvan in Scotland
Posted Monday 13th August 2018
The Scottish Medicines Consortium (SMC) has today announced that they have rejected the submission for the routine funding of Kuvan in...Read More
NSPKU statement on NHS England Kuvan policy
Posted Saturday 11th August 2018
The NSPKU have recently been informed by NHS England that it will develop a policy for using Kuvan (sapropterin) with the intention that...Read More

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