Gastrointestinal Symptoms Survey – Open now, please help!
Please help the Birmingham Children’s Hospital Dietetic Team and the NSPKU by filling out this voluntary and anonymous survey about […]
Sapropterin users – We Need YOU – please help!
NOW CLOSED, THANK YOU! If you use sapropterin please help PKU researchers by completing this survey – just click on […]
Price of Stamps in PKU – OfCom Interviews
Postage & PKU Are you living with PKU and can you take part in an online one to one interview […]
PKU “S.P.O.R.T PROJECT”
Annie Skidmore, PhD candidate at Birmingham City University, would like YOUR help! Annie’s research will include exploring experiences around PKU and […]
Sapropterin accessible to all age groups in Northern Ireland
The NHS in Northern Ireland has decided to allow prescribing of sapropterin (previously known as Kuvan) for responsive patients with […]
Open Letter to British Inherited Metabolic Diseases Group about Sapropterin Testing
The NSPKU is requesting a review of the sapropterin testing pathway for people with PKU in England and we have […]
Information on NICE Kuvan Decision
NICE recommendations about sapropterin (Kuvan). What they mean for patients with PKU: Who is NICE and what has […]
NSPKU Survey for children with PKU aged 18 or under (for carer/parent to complete)
This survey is for children aged 18 or under (the carer/parent or guardian to complete) and the survey is about […]
NSPKU Survey for people with PKU aged over 18
This survey is for everyone with PKU aged over 18 (or their carers, parent or family member) and the survey […]
Sheila – Unlocking the Treatment for PKU – Orders outside the UK
In 1951, Sheila Jones was the first person in the world to be treated for Phenylketonuria (PKU) at Birmingham Children’s […]