NSPKU

🍰 Happy World Baking Day! 🍰 Today, we celebrate the joy of baking with Promin Low Protein All Purpose Baking Mix and Cake Mixes—perfect for whipping up delicious low protein treats! 🎂🍞 What are you baking today? Share your creations with us! 👩‍🍳 #MadeWithPromin #lowprotein

This is a questionnaire for everyone with PKU or their carers. We want to know if you have been tested with sapropterin or not. What is your experience? We look forward to hearing from you nspku.org/survey-share-y…

Well done to another NSPKU - in Czech Republic! 🙌🙌🙌

🌍 Calling adults with PKU worldwide! If you are 16+ and living with PKU, please take part in an important questionnaire about adult life with PKU. 📲 pku.at/vewzjt Please share! #PKU #adultpkuawareness #raredisease

Wow!!!! Very beautiful #lowprotein #pku 😋😋😋

Protein and Micronutrient Intake After Two Years of Sapropterin Treatment in PKU. Thank you to our families and Ozlem. mdpi.com/3884252 #mdpinutrients via @Nutrients_MDPI

#PKU community Share your overall experiences w sapropterin so far… Are you a responder? How was this for you? Did you not respond or were you not offered testing, how was this? Adults w PKU, caregivers of children or others w pku, if in the UK, pls help forms.cloud.microsoft/pages/response…

We are happy to see this #IPKUDAY2026 competition. Good luck to everyone who's participating!

Remember the NSPKU Happy Competition for International PKU Day. Please submit your entry by 7th June

📢 Nominate a candidate for a Sheila Jones Award! 🏆 Don't hesitate: espku.org/sheila-jones-a…

🎂Louis’s mum created this incredible birthday cake using our Promin Low Protein Classic Cake Mix — what a fantastic creation! ✨ Wishing Louis a very Happy Birthday! 🥳 #MadeWithPromin #lowproteindiet #lowprotein #PKU

Thank you to everyone who stopped by our stand at the NSPKU Conference in Crewe! 💙 It was a real privilege to be part of such a wonderful event and to meet so many incredible families, as well as reconnect with old friends and make new ones along the way. #MadeWithPromin #PKU

📢 We're looking for a person group of people and PKU patients' organisations from all over the world that help people with PKU. Nominate them to The Sheila Jones Award: 👇 espku.org/sheila-jones-a…

@macdonj @satnamc1 Thank you for a very energetic 10 years of retirement….. I think you just shifted into 7th gear!

Thank you to my team for making tonight very special. Ten years ago today I tried to retire - but somehow - we are sill here! The slippers remain in their box!

@macdonj Thank you from us all 🌟🌟🌟

Thank you to all our Team for doing a brilliant job sharing their research at the NSPKU meeting in Crewe in Saturday - everyone is working hard to try and improve the way we treat PKU

PKU Perspectives: Eve & Helen’s Journey! ✨ Welcome to part 3 of PKU Perspectives: Eve & Helen’s Journey! "Did PKU ever hold Eve back? Helen says no- but the teenage years brought unique challenges. In Episode 3, they talk about navigating independence, social life and the worry of a parent. #PKUAwareness #FamilyStories #PKUJourney #PKUProud

Mental health is just as important as physical health when helping people to live well. Neurological conditions can co-occur with anxiety, depression, behavioural change and more. It can be hard for young people to voice their feelings, especially if they use alternative communication methods. Do you work with children and young people? Don’t assume they’re ok, they may be coping with more than you know. It’s everyone’s responsibility to make sure children and young people are supported. Not sure how? Download this toolkit on how to support children and young people impacted by neurological conditions ➡️ bit.ly/4qCMCkL #BrainAwarenessWeek #NeurologicalConditions #BrainHealth #RareDiseases #MentalHealth #MentalHealthSupport

PKU & overweight ⚖️ Latest European PKU Guidelines show similar rates to the general population—but risks still matter 🚨 ❤️ Cardiometabolic health should be monitored 🏃 Physical activity & good metabolic control are key

@NSPKU @SuzanneFord19