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 is #Movember We advocate and raise awareness of men's health. It's important for men to do necessary tests to monitor their health.

At #ESPKUConferene2025 Ania C Muntau shared valuable experiences from Germany with Sepiapterin and Pegvaliase therapies for PKU.

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.

This week is #InvisibleDisabilitiesWeek 🌍 Conditions like #PKU may not be visible, but their impact is real. Disability systems must evolve to recognize invisible challenges — support should depend on need, not appearance.

🔬 We know the effects of #PKU in children — but what about adults? Neuropsychological, emotional, metabolic, and social challenges persist… yet research remains limited. 🧠 It’s time to focus on adults with PKU. We need more studies — and more patients willing to take part.

💊 #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

Congratulations to Association nationale Les Feux Follets, our member organisation, on celebrating their 30th anniversary. 🎉 This weekend, they’re marking this special milestone during their annual conference 🇫🇷

Today is #WorldMenopauseDay! 🌍 Women with #PKU face hormonal changes that can affect both metabolic control and mental health. They deserve understanding, support, and research that helps them feel their best through every stage of life.

🎀 October is #BreastCancerAwarenessMonth 🎀 Women with #PKU — remember: 🔹 Regular check-ups (USG or mammography) 🔹 Self-exams 👐 🔹 Inform your PKU doctor if anything unusual is found 💪 Early detection saves lives!

🌍 E.S.PKU President Eric Lange joined 'Low Protein Traces of Life: PKU Family Meetings' in Istanbul 🇹🇷, sharing European PKU updates, new treatments & importance of doctor–patient relationships. Grateful to PKU Turkey for the warm welcome! #PKU #ESPKU #PKUTurkey

How Europe defines Unmet Medical Need will shape the future of rare disease care. At #EHFG2025, ESPKU joined experts and patient voices to ensure PKU and rare communities are not left behind. #ESPKUatEHFG2025

It's World Mental Health Day! We use #WMHD2025 to emphasize the influence of PKU on mental health of patients & their families. This year in accordance with the theme 'Mental health in humanitarian emergencies' we urge everyone to remember about patients that experience them.

'Patients Meet Professionals' one of the standout sessions at #ESPKUConference2025, shed light on the challenges adult PKU patients face in clinical settings 💡👥. It also highlighted the need for clearer communication and transparency around clinical trials 🔬🤝

A big thank you from everyone at @espku.org to all those who joined our #EFHG2025 Panel discussion on: Defining Unmet Medical Need: What Counts?

One day to go before our ESPKU #EFHG2025 panel on Defining Unmet Medical Need: What Counts? #ESPKUatEHFG2025 14:30 | 2 October 2025 | Bad Gastein Conference Centre Don't miss the chance to follow this discussion on how we can design patient-centred systems for the future.

⏳ In just 2 days! Join our #EHFG2025 panel on Unmet Medical Needs – a key topic shaping access to innovative therapies, incl. for people with PKU. 📅 Thu, 2 Oct | 14:30–15:45 CEST 💻 Free online registration still open 👉 ehfg.idloom.events/european-hea... #ESPKUatEHFG2025

Thank you for attending #ESPKUConference2025 and see you next year in Copenhagen!

We were privileged to have previous Sheila Jones Award winners at #ESPKUConference2025

Congratulations to this year's winners of the Sheila Jones Award Ann Oun and Maarja Utno from the Estonian PKU organisation!

Your name tag has a QR code that contains #ESPKUConference2025 program.

Remember to register and pick up #ESPKUConference2025 materials. Remember to always carry your name tag!

📢 September is Newborn Screening Awareness Month! 👶 Children, no matter where born, must have access to newborn screening. It should be mandatory as it improves and safes lives. ‼️We must advocate to be sure that newborns around the world are screened for PKU and other conditions.

Ahead of #EHFG2025 E.S.PKU reminds of its paper on Unmet Medical Needs (UMN) as EU revises its pharma legislation 💊🇪🇺 📌 PKU shows that despite dietary therapy, major unmet needs remain. Read more 👉 www.espku.org/wp-content/u...

We are pleased to inform that all participants of #ESPKUConference2025 have received all the necessary information at the email address provided during registration.

PKU matters! Join E.S.PKU as audience participants at #EHFG2025 panel: 🧩 Defining Unmet Medical Need: What Counts? 📅 2nd October 2025 | 14:30 – 15:45 CEST Let’s show that the PKU community is strong & united! 🌍💪 🔗 Register online:https://ehfg.idloom.events/european-health-forum-gastein-2025

📢 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.

📢 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!

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

Our Secretary Tobias Hagedorn is reporting from #ICIEM2025 He connected with scientists, companies, and patient organisations from around the globe and reps of the Japanese #PKU Association. Japanese calligraphy on the card mean “European Phenylketonuria Society.” 🖌️

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

We are delighted to share that Tobias Hagedorn, Secretary of E.S.PKU, will be participating in the upcoming International Congress of Inborn Errors of Metabolism #ICIEM2025 , taking place from September 2–6, 2025, in Kyoto, Japan.

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! 💬

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.

📢 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!

Exactly 1 month left to #ESPKUConferene2025! DIG PKU e.V. and us we can't wait to welcome you all to beautiful Hamburg! Are you coming?

🌍✨ 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

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?...

🌍 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?

🌍 #ESPKUConference2025 is coming! Hear from 🇩🇪 experts about their experiences with 💊 Sepiapterin & 💉 Pegvaliase. 💬 Ask questions & learn the latest in treatment!

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! 🇩🇪

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. 👩👨👧👦

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! 👇

📢 Tobias Hagedorn, our secretary, has huge experience in advocacy for families with #PKU and other rare diseases. 🧐 This article is a must read for everyone involved in advocacy in #rarediseases community: rarerevolutionmagazine.com/rare-insider...

💬 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. 💡

#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.

✈️ Traveling with PKU or allied disorder treated like PKU? Get your E.S.PKU Metabolic Passport! 😃 It eases security checks & provides vital info abroad. 📞Contact your local E.S.PKU member PKU association to get yours. Already used it? Share your story: 📩 [email protected]

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.

E.SPKU Conference 2025 hosted by DIG in Hamburg! 🇩🇪 This year, DIG celebrates its 50th anniversary! 🎉 The conference will be at the University Medical Center Hamburg-Eppendorf (UKE). More details coming soon! #ESPKUConference2025