NSPKU

The NSPKU exists to help and support people with PKU, their families and carers. It was formed in 1973, see

[ESPKU @official_espku]

👣 The brightest #tracesofpku are the people who cared. #IPKUDAY2026 #pkumentalhealth

[Anita MacDonald @macdonj]

Body composition in adults with phenylketonuria: A 5 years follow-up study
https://t.co/18ZgmVPXnU

[Bernadette Sheehan Gilroy @sheehangilroy]

@NSPKU @official_espku @GAP_PKU @PKUArgentina @pku_at @NPKUA_Info @CMA_Docs @pku

[ESPKU @official_espku]

🏆 Nominations for the 2025 Sheila Jones Award are still open! ✨

This award celebrates individuals, groups, and organizations making a real difference in the lives of people living with PKU and their families.

Nominate them today 👇
https://t.co/M7AiOPADck

[ESPKU @official_espku]

📢 Reminder for PKU professionals: Abstract submissions for the #ESPKUConference2026 Professional Meeting are still open!

Share your research and developments in PKU.

Submit by 25 July 2026:
https://t.co/tLJFWtemXP

[ESPKU @official_espku]

👣 Every life carries traces.

Living with PKU leaves traces on our lives and our mental health.

Welcome to #tracesofpku

💬 What traces has PKU left in your life?

#IPKUDAY2026 #pkumentalhealth

[Promin Metabolics @ProminMetabolic]

🍰 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

[Anita MacDonald @macdonj]

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 https://t.co/r1C1HHeL6b

[NSPKU @NSPKU]

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

[ESPKU @official_espku]

Today we celebrate the 20th anniversary of Národní sdružení PKU a jiných DMP – the Czech National PKU Association! 🎉 Join us on congratulating them on their anniversary. 👏

[ESPKU @official_espku]

🌍 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.

📲 https://t.co/UOCCIYgVrA

Please share!
#PKU #adultpkuawareness #raredisease

[NSPKU @NSPKU]

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

[Anita MacDonald @macdonj]

We have beautiful low protein cake 'show stoppers' today

[Anita MacDonald @macdonj]

Protein and Micronutrient Intake After Two Years of Sapropterin Treatment in PKU. Thank you to our families and Ozlem. https://t.co/toQVlsoOAV #mdpinutrients via @Nutrients_MDPI

[NSPKU @NSPKU]

#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
https://t.co/2yglgwZwiP

[ESPKU @official_espku]

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

[Anita MacDonald @macdonj]

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

[ESPKU @official_espku]

📢 Nominate a candidate for a Sheila Jones Award! 🏆 Don't hesitate: https://t.co/M7AiOPADck

[Promin Metabolics @ProminMetabolic]

🎂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

[NSPKU @NSPKU]

#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
https://t.co/2yglgwZwiP

[Promin Metabolics @ProminMetabolic]

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

[ESPKU @official_espku]

📢 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: 👇
https://t.co/cnPoAYTvjw