National Society for Phenylketonuria

07/06/2026

🌧️ Is it a rainy Sunday where you are?

Why not spend 10 minutes helping NSPKU by completing our community survey:

https://forms.gle/MRpgmEqnaiLhCDPL7

The information YOU provide helps NSPKU explain to the NHS, researchers and decision-makers what life is really like for people affected by PKU and their families.

Your responses help us:
✅ Highlight the challenges you face
✅ Demonstrate unmet needs
✅ Make the case for better services and support
✅ Advocate for access to new treatments and innovations

The stronger the evidence we can provide, the stronger the case we can make on your behalf.

Thank you for helping us ensure that the PKU community's voice is heard. 💙

03/06/2026

Save the Date – International PKU Day 2026

Join NSPKU online on Sunday 28 June at 10.30am for a special International PKU Day event.

Hosted by Tom Chimiak, we'll be hearing about PKU Day activities taking place across the UK, before Professor Anita MacDonald shares the latest developments in PKU research and the exciting new treatments on the horizon.

💙 Free for NSPKU members – registration details coming soon.

We're also launching the NSPKU Research Fund, supporting future research projects that could improve the lives of people living with PKU. To mark the occasion, we're asking our community to donate or fundraise through our JustGiving campaign.

👉 Save the date and watch out for registration details.

👉 Support the NSPKU Research Fund here: https://www.justgiving.com/campaign/pku2026research

Together, we can celebrate our community and help fund the next generation of PKU research.

19/05/2026

Please send pictures of your work or videos to [email protected] by the 7th June.
Include your child’s name and age.
Winners announced on International PKU Day 28th June.


Competition Categories;

Art and Craft: Create a picture, painting, collage, sculpture, or craft that shows what happiness looks like, feels like,
or means to you.
Photography: Submit a photo that captures a happy moment, a joyful place, or something that makes you smile.
Writing: A poem, a short story, or a “recipe for happiness”
Cooking and Food Art: Create a “happy food” design – this could be a decorated biscuit, a joyful fruit plate, or a smiley cake
Short Video: A “What Makes Me Happy” mini-documentary, a dance of joy, or a happy song
Jokes: Your funniest happy joke

15/05/2026

We need you to complete the NSPKU survey, which is for people with PKU or parents and carers. We take your experiences and views to the NHS to influence investment in new treatments and services. When you have a moment, click the link, sit down and work through the questions - its important we hear from you. https://forms.gle/36jnyPdNbpUFLX7j8

11/05/2026

We want to celebrate our children’s creativity and joy for International PKU Day on 28 June. This competition is open to all children with pku (and their brothers and sisters). Let’s enjoy their drawings, photos poems, videos or jokes!

10/05/2026

10/05/2026

Attention 📣📣women and girls 16 plus with pku. This research is looking at periods and pku. We need your input to understand this issue better.
Click the link 👇👇

24/01/2026

Thank you to our member Claire Briggs for sharing her story about the long wait to access sapropterin in Scotland. This needs to be resolved swiftly for Claire and other adults with pku in Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿

Claire can only eat 15g of protein a day due to PKU, a rare condition that causes a 'toxic' build-up of phenylalanine in the body.

14/01/2026

14/01/2026

Thank you Fulton MacGregor MSP for organising a debate in the Scottish Parliament to discuss care and treatment for people with pku in Scotland.
It was wonderful to hear the respect for the lived experience of real people living with this rare metabolic disease from so many MSPs. We hope to move towards improvements in access to care and support. Neil Gray MSP