Why are we collecting this information?We want to find out where there are problems in the system for people with PKU. We may share anonymous information with the NHS, MPs, government or healthcare organisations and others in the course of our work.
We may publish anonymous data in aggregated form in academic journals or elsewhere as part of our work to improve services and care for people with PKU. Your free text responses may be used. Your postcode will not be published.
Do you need practical help now?The NSPKU can provide practical help. If you want someone from the NSPKU to contact you, there is an option to tell us this at the end of this form.