#ESPKUConference2025
At #ESPKUConference2025 Prof. Anita MacDonald discussed new dietetic innovations:

✅️GMP benefits for gut & growth
✅️Additives in low-protein foods may disrupt microbiota
✅️3D food printing - customization & less waste
✅️Prolonged-release proteins improve metabolic control.
November 7, 2025 at 10:01 AM
At #ESPKUConference2025 the First Revision of the European PKU Guidelines was presented, with a detailed overview of the revision process. 📘 Participants discussed adult PHE targets 🎯📊 via a survey — most adults prefer stricter targets, even if potentially overtreated.
October 28, 2025 at 8:22 AM
💊 #ESPKUConference2025: How can patient orgs help get drugs approved?

Message from 1 HTA expert and 2 patients orgs leaders:

🔹 Know your HTA & reimbursement process
🔹 Tell your story – it matters 💬
🔹 Don’t give up 💪

#PatientAdvocacy #PKU #RareDiseases #HealthPolicy
October 20, 2025 at 7:15 AM
Thank you for attending #ESPKUConference2025 and see you next year in Copenhagen!
September 30, 2025 at 3:11 PM
We were privileged to have previous Sheila Jones Award winners at #ESPKUConference2025
September 29, 2025 at 6:44 AM
Your name tag has a QR code that contains #ESPKUConference2025 program.
September 25, 2025 at 1:36 PM
Remember to register and pick up #ESPKUConference2025 materials. Remember to always carry your name tag!
September 25, 2025 at 1:35 PM
We are pleased to inform that all participants of #ESPKUConference2025 have received all the necessary information at the email address provided during registration.
September 17, 2025 at 4:48 PM
📢 We are excited to announce that Ajinomoto Cambrooke, Inc. Nutricia and Vitaflo are silver sponsors of the 39th E.S.PKU Conference!
Attendees of the #ESPKUConference2025 will have the opportunity to visit their booths and meet their teams during the Industrial Exposition.
September 17, 2025 at 4:41 PM
📢 We are excited to announce that
@ptcbio.bsky.social is a gold sponsor 🥇 of the 39th E.S.PKU Conference!

Attendees of the #ESPKUConference2025 will have the opportunity to visit their booth during the Industrial Exposition. We look forward to seeing you there!
September 10, 2025 at 3:18 PM
At #ESPKUConference2025 one of the most important sessions is the patient program. This year, prepared by the German PKU Association, will focus on: 👶 maternal PKU, 🧠 psychological care & 🔬 clinical trials. It`ll offer a new perspective on these topics✨ #PKU
September 10, 2025 at 3:15 PM
During the #ESPKUConference2025, the session dedicated to the delegates of the member organisations will take place and will focus on:
⚖️ Advocacy
🏛️ E.S.PKU political engagement
🧪 Health Technology Assessment
🔬 Research
🤝 Networking
September 2, 2025 at 1:08 PM
At #ESPKUConference2025 patients will have a unique chance to ask doctors, dietitians & scientists their own questions during “Patients meet Professionals”

Your voice matters. Your experience counts. Don’t miss it! 💬
August 29, 2025 at 7:09 AM
Just like every year, the Poster Exhibition will be a key part of the #ESPKUConference2025!

📍 You’ll find the posters right next to the main lecture hall.

Posters present new ideas and research that could one day lead to better treatments and a deeper understanding of PKU.
August 28, 2025 at 7:23 AM
📢 We are excited to announce that BioMarin Pharmaceutical Inc. is a gold sponsor 🥇 of the 39th E.S.PKU Conference!

Attendees of the #ESPKUConference2025 will have the opportunity to visit the BioMarin booth during the Industrial Exposition. We look forward to seeing you there!
August 27, 2025 at 7:14 AM
🌍✨ At #ESPKUConference2025 the Scientific Program is a key highlight for doctors, dietitians & researchers in #PKU. Topics include: 🧠 cognition, 🧩 MRI, 🇫🇷 French PKU studies, 🧬 30 yrs of gene therapy & ⚖️ treating >360 μmol/l. 💙 #RareDiseases #PKU #Healthcare
August 25, 2025 at 7:17 AM
We encourage you to watch the interview with our Secretary, Mr Tobias Hagedorn, for CheckRare. He discussed #PKU, Unmet Medical Needs, and our Joint Policy Paper. This is a great preparation for the discussion panel @ #ESPKUConference2025

youtu.be/3V7CtDq0n8g?...
Unmet Medical Needs in Rare Diseases
YouTube video by CheckRare
youtu.be
August 20, 2025 at 7:39 AM
🌍 Access to PKU treatments in Europe depends on national reimbursement – meaning big differences between countries.

🤝 At #ESPKUConference2025 reps from various patient organisations & experts will discuss: What can patient organisations do to get drugs approved?
August 18, 2025 at 7:59 AM
🌍 #ESPKUConference2025 is coming! Hear from 🇩🇪 experts about their experiences with 💊 Sepiapterin & 💉 Pegvaliase.
💬 Ask questions & learn the latest in treatment!
August 14, 2025 at 2:05 PM
The 39th E.S.PKU Conference is officially sold out! For everyone who has sent an inquiry about the conference - if you haven't received a response, you will hear from us shortly ⏳. For those of you who have secured your spot at #ESPKUConference2025, see you in Hamburg! 🇩🇪
August 11, 2025 at 7:13 AM
The EMA's approval of Sephience and ongoing clinical trials are opening up new treatment possibilities. At #ESPKUConference2025, Professor Francjan van Spronsen will discuss what these innovative therapies mean for patients. 👩👨👧👦
August 5, 2025 at 6:58 AM
This year, European PKU Guidelines got their first revision. Germany has its own PKU Guidelines. 🧐

Join Prof. van Spronsen & PD Dr. Burgard at #ESPKUConference2025 to discuss the differences & similarities. You'll get to ask questions too! A must-attend session! 👇
August 1, 2025 at 7:35 AM
💬 Growing up with PKU? Transitioning to adult care can be a big step. At #ESPKUConference2025, we’ll hear how Leipzig supports young patients during this change. 💡
July 24, 2025 at 5:48 AM
#ESPKUConference2025 will offer insight into PKU care in Germany, sharing their experiences also with new methods of therapy.

Super valuable for patients & parents! Learn directly from experts. 👨‍👩‍👧‍👦

We're excited for the insights! We'll share highlights after the conference.
July 22, 2025 at 7:19 AM
At this year's #ESPKUConference2025 the first revision of the European Guidelines on PKU diagnosis and treatment will be discussed!

Read it here: pku.at/i473xd 📖

You`ll have a unique chance to ask experts your questions! 🙋‍♀️🙋‍♂️ Read them to maximize the discussion.
July 17, 2025 at 7:31 AM