PKU awareness Uk & Ireland with PKblUe

15/04/2026

31/03/2026

Nice little email from the makers of Lucozade today. And good to know that Grafruitti won’t contain Aspartame. Just Acesulfame K and Sucralose.

26/03/2026

Thank you Promin Metabolics for this years Easter hampers sent to all xphe patients. Look how amazing that low protein hot X bun looks 🙂

22/03/2026

Everyone knows of our famous smoothies… in this we have Strawberries, Blueberries, Blackberries blended with coconut water and a sachet of GMpro Lemonade

15/03/2026

Here’s another one of our famous smoothies! Fresh strawberries and fresh raspberries mixed in with a complimentary flavour of the lemonade GMPro. From Nutricia.

14/03/2026

5.3g per serving. For those with higher allowances, this is a must!

11/03/2026

New flavoured Coke a cola which is PKU friendly! NO Aspartame! And no E951! (Aspartame)

28/02/2026

https://youtu.be/7J1oTfoIOGw

The Official Campaign Video of Rare Disease Day 2026- Learn more and get involved!👉 https://www.rarediseaseday.org/

28/02/2026

Today is rare disease day, what are you doing to mark the occasion?

Today is Rare Disease Day!

We celebrate the strength of everyone living with PKU and the families who support them every single day. 💪

Children with PKU deserve the strongest possible start in life. Early diagnosis and proper treatment protect their developing brains and give them the opportunity to grow, learn, and thrive. 👶🧠✨ But that protection must continue beyond childhood.

PKU is lifelong. The first generation diagnosed early is now entering adulthood and senior years. Yet adult care is still inconsistent, research on aging with PKU is limited, and access to proper treatment is not always guaranteed.

This must change. ⚠️

When PKU treatment is not properly funded:
• metabolic control worsens 📉
• mental health suffers severely 😔🧠
• cognitive function and learning may decline
• the risk of disability rises.

Disability and poor mental health create far greater long-term costs for families and society than properly funded preventive care. 💰

Medical formulas and low-protein foods must be reimbursed, or adequate financial support guaranteed. 💊🥗 Without this, patients risk serious health complications, declining mental health, loss of independence, and lower quality of life while governments face much higher costs when disabilities and long-term complications appear. Rare must never mean overlooked.

If you believe in lifelong care for people with PKU, please LIKE 👍 and SHARE 🔄 this post to help raise awareness and strengthen our voice as a community.

26/02/2026

With Abersoch beach cafe – I'm on a streak! I've been a top fan for 17 months in a row. 🎉