Campaign for PKU – tell your MP about the impact of PKU
Our charity NSPKU has been campaigning in Parliament for understanding and support for PKU since 2017. This started by people […]
Update on Palynziq/Pegvaliase for PKU
NSPKU has recently had discussions with BioMarin, the manufacturer of the injectable PKU medicine for adults called pegvaliase or Palynziq. […]
Information on NICE Kuvan Decision
NICE recommendations about sapropterin (Kuvan). What they mean for patients with PKU: Who is NICE and what has […]
Watch the NHS England presentation about sapropterin (Kuvan)
NHS England will consider a policy to use sapropterin (Kuvan) for PKU next week. We have received the following message […]
Talking PKU in Parliament
[smartslider3 slider=7] When we started our campaign for better care for PKU in Parliament we really wanted to get across […]