PKU LIFE Romania

02/06/2026

02/06/2026

We are happy to share an important update from Qlife Holding AB and egoo.health.

Qlife has entered into a fully funded feasibility agreement with a global pharmaceutical company to evaluate a specific biomarker application on the Egoo Health platform.

The study will explore how decentralized, high-quality biomarker measurement can support a defined therapeutic use case — bringing testing closer to where patients are and helping enable faster, more accessible health insights.

This is an important first step toward a potential long-term collaboration involving dedicated development, regulatory work, and future supply of Egoo Health systems for the targeted application.

At egoo.health, our mission is to make advanced biomarker testing more accessible and support the shift from reactive healthcare to proactive health understanding.

We look forward to sharing more as the project reaches its next milestones.
Link to Press Release in comments

01/06/2026

🎈1 Iunie 2026 – Ziua Copilului🎈

Un gând special se îndreaptă către copiii din comunitatea PKU și către familiile lor, care transformă în fiecare zi grija, răbdarea și speranța în putere.

✨ Fie ca zâmbetul vostru să rămână mereu cea mai frumoasă victorie!

La mulți ani tuturor copiilor!

💚 PKU LIFE România 💚

29/05/2026

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

The will take place in Copenhagen, Denmark, from 22–25 October 2026 and will bring together the PKU community from across Europe and beyond for four days of education, collaboration, and celebration.

The registration link will be published on our social media channels today at 6:00 PM CEST.

Before completing your registration, we kindly ask all participants to carefully read the registration terms and conditions.

We are delighted to inform you that, due to increased capacity this year, we will be able to welcome more participants than during last year’s conference.

Together with PKU Foreningen for Danmark organisers of this year’s conference, we are looking forward to welcoming you all to Copenhagen for this special anniversary edition of the E.S.PKU Conference.

28/05/2026

18/05/2026

📢 Calling adults with PKU!

Are you aged 16 or over and living with PKU? We’re inviting adults with PKU from ALL OVER THE WORLD to take part in an important questionnaire about everyday life with PKU.

PKU is more than just diet management. Many adults experience challenges with:
🧠 Concentration & memory
📅 Planning & organisation
💬 Social relationships
💼 Work & education
🏠 Independence in daily life
💛 Emotional wellbeing

Although early treatment prevents severe disability, there is still very limited research about how PKU affects real-life functioning in adulthood. This study aims to change that and YOUR voice can help make it happen.

By completing the questionnaire, you can help:
✔️ Improve understanding of adult PKU
✔️ Support better services and care
✔️ Guide future research
✔️ Highlight the real experiences of adults living with PKU
✔️ Strengthen patient-centred support worldwide

📝 Take part here:
https://forms.cloud.microsoft/pages/responsepage.aspx?id=4ZgtEu8sd0WRa6Q7uQHdUbZ_NQ3b-DhLm6nbJ30KKlNUNFpTMEY4SVQyWTkwR1FEVjZIWDI2VjE2OS4u&route=shorturl

This research is led by Dietetic Team at Birmingham Children's Hospital.

🔄 Please take part and SHARE this post so we can reach as many adults with PKU as possible! Every response matters and helps turn lived experiences into research evidence that could improve the future of adult PKU care worldwide. 🌍

Together, we can make adult voices heard.