Ask your MP to see NSPKU in Parliament. People living with PKU still need support for their rare condition.
NSPKU will be holding a drop-in event in Parliament for MPs and their staff on Wednesday 13 March. We are hosted by Liz Twist MP.
Pass on these details to your MP, explain how PKU affects you or your family and ask for their support.
Date: 13 March 1 pm to 2.30 pm
Location: Room Q, Portcullis House, Houses of Parliament
MPs and their staff will have the opportunity to:
• Speak to campaigners and healthcare professionals about the issues affecting people with PKU
• Many people with PKU now benefit from the new treatment Kuvan but many others are still waiting for new treatment options.
• Hear the views of people living with PKU across the UK about what matters to them, from the survey conducted by NSPKU
• The need for new treatments and better ways of monitoring blood levels for people with PKU
• The need for consistent clinic services across the UK
