ESPKU

📢 Registration for the 40th E.S.PKU Conference is now OPEN! 📝 Before registering, please read the Terms of Service carefully. 🔗 Register here: espku.org/conferences/e-… We look forward to welcoming the PKU community to Copenhagen in October 2026! 🇩🇰

📢 We are pleased to announce that registration for the 40th E.S.PKU Conference will open today, 29 May 2026 at 6:00 PM CEST (Copenhagen Time).

As we approach the #tracesofpku campaign organised on the ocassion of #IPKUDAY2026 we want to point attention to the issue of bullying. We are saddened to learn it's experienced by both children and adults with PKU and it's related to their disease.

Traces of PKU starts in 7 days. ✨ Real stories. Honest emotions. The unseen mental health impact of living with PKU. 🧠🌿 #IPKUDAY2026 #tracesofpku #pkumentalhealth

🏆 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 👇 espku.org/sheila-jones-a…

🌍 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

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. 👏

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

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

Happy Mother's Day to all amazing moms in our PKU community: mom of children with PKU👩‍🦱🧒 ,women with PKU who are mothers 👱‍♀️👱and women with PKU who are going to be moms soon. 🤰

We encourage everyone to read the latest European PKU Guidelines: sciencedirect.com/science/articl…

🧠💙 Mental health is part of PKU care. The new European PKU Guidelines say emotional wellbeing should be discussed at every clinic visit. Don’t be afraid to talk about stress, anxiety or daily challenges. Your voice matters. 🤝 #PKU #MentalHealth #RareDisease

📢 Today we announce the tittle and theme of this year’s International PKU Day campaign: 🧩 “Traces of PKU” 🧠 Theme: Mental Health Join the conversation and learn more: espku.org/2026/05/04/int… #IPKUDAY2026 #tracesofpku #pkumentalhealth

📢 Tomorrow we’ll share the official announcement of this year’s International PKU Day campaign! #IPKUDAY2026 Don’t miss it!

Recommendation 28 should be standard in Phenylketonuria care. 👉 Every clinic visit 👉 Every appointment Discuss quality of life, mental health, anxiety & adherence. This guideline exists to be used, not ignored.Everyone should adhere to it.

Living with Phenylketonuria? Most people have a good quality of life 💪 But daily challenges like diet, stress & mood are real. 👉 Good support + Phe control = better wellbeing You’re not alone 🤝

In 1 month our campaign on the ocassion of #IPKUDAY will begin. This is a last hint on its theme and tittle before an official announcement. #IPKUDAY2026

📢 While in Brussels Tobias Hagedorn had series of very important meetings. Mr Hagedorn met with: Billy Kelleher, Aurelijus Veryga, Rubén Prol Mariño (Accredited Parliamentary Assistant to MEP Nicolas Casares, S&D, Spain and Stine Bosse.

Tobias Hagedorn during his speech at the Parliament Magazine Rare Disease Forum emphasized the importance of screening newborns for various diseases and make sure no European child is left behind.

Our Assessor for Public Affairs Tobias Hagedorn spoke at the The Parliament Magazine Disease Forum on unmet needs in PKU. Newborn screening saves brains in childhood but PKU is lifelong and adult brains remain vulnerable. Lifelong care must be a policy priority.