NSPKU Campaign – We Need Your Support
The NSPKU is campaigning for better understanding of PKU in health and public services. Too often, people with PKU are not recognised for the daily challenges they face. We want this to change.
We are also calling for access to new technologies. Two big advances are on the horizon:
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Home blood phenylalanine monitoring – so people can test at home and get results quickly, instead of waiting days for dried blood spot results.
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Sepiapterin – this new medicine has shown great results in clinical trials allowing people to manage their PKU whilst eating significantly more protein. PTC Therapeutics has confirmed that it plans to seek a licence for sepiapterin within 12-18 months.
These could transform life with PKU – but only if the NHS makes them available.
People living with PKU are the engine of change
Our experience has shown that access to new treatments does not come easily. Decisions are often made without understanding the real impact of PKU. That is why people with PKU and their families are vital to this campaign.
We need you to help drive change by contacting your MP. Please invite them to our event in Parliament on 11 November 2025. At this event, MPs can hear directly from families and learn about the new treatments being developed.
We will be emailing all our members a template letter which they can use to email your MP. If you aren’t a member, email info@nspku.org and we will send you the template letter. The template letter is a starting point for you to use. Your own words and experiences about PKU are the most important thing to include. MPs receive lots of standardised emails and letters and your own personal stories will get more attention.
Take Action
Write to your MP. Invite them to the NSPKU event on 11 November. Tell them why PKU matters. Together, we can make sure people with PKU get the support and treatments they need.
If you aren’t a member of our charity yet, consider joining – so you can support our work and keep up to date with news and information about research, campaigns and activities.
Raise awareness across the UK
People across the UK all have Members of Parliament and you should ask your MP to attend on 11 November. NSPKU has always had supportive MPs from every part of the UK and we hope this continues.
If you live in Scotland we are also running a separate event in the Scottish Parliament (details to follow).
