Other news relating to PKU.
Webinar: Sapropterin Policy Decision
Posted Tuesday 8th September 2015
The NSPKU will be meeting with NHS England (NHSE) tomorrow (9th September) to discuss the recent decision by NHSE to not fund...Read More
ESPKU Competition
Posted Monday 3rd August 2015
Are you over the age of 18? Do you have PKU?? Would you like to attend the ESPKU Conference in Berlin??? If you answer yes...Read More
The NSPKU is looking for a News & Views Editor and Copywriter
Posted Monday 3rd August 2015
Please see advert for further information on these voluntary vacancies. Read More
NHS England decision on Kuvan/Sapropterin for PKU
Posted Thursday 9th July 2015
NSPKU Statement on NHS England decision - Kuvan / BH4 / Sapropterin Many of you may be aware that NHS England has been considering a...Read More
Let Your Voice Be Heard
Posted Monday 15th June 2015
On Tuesday 16th June 2015 between 2.30pm and 4pm a debate will be taking place in Westminster Hall, House of Commons on “Access to...Read More
BH4/Kuvan Commissioning Policy
Posted Tuesday 14th April 2015
NHS England is currently considering a policy for the use of BH4 in children with PKU. BH4 is a chemical “helper” that...Read More
Telephone research
Posted Tuesday 4th November 2014
Clear Voice Medical Research, a market research firm based in Denver, Colorado. Working in coordination with Huron Consulting Group, are...Read More
Can we close the gap in PKU care?
Posted Tuesday 12th August 2014
Can we close the gaps in PKU care? A Report on the ESPKU delegates Croatia Meeting, on 29th March, Westin Hotel, Zagreb. The...Read More
Parent's Experience Study
Posted Wednesday 14th May 2014
  Are you willing to share your experience of being told your child had PKU?  A research study is being carried out by...Read More
News & Views Issue 144
Posted Sunday 15th December 2013
We love keeping in touch with our membership and pride ourselves on providing the best service we can. If you haven't received...Read More