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. Join us in congratulating DIG on 50 years! 👇

Ready for your summer adventures? ✈️ ☀️ Don't forget your E.S.PKU Metabolic Passport! 🌍 This vital document explains your PKU needs. Get yours via your national PKU association!.Used it? Share your experience with E.S.PKU: espku@espku.org

📢 We kindly inform you that, as for right now, registration for #ESPKUConference2025 is closed. We have already reached our capacity limit. We are evaluating options if we can release additional tickets.

Our #shadesofpku campaign is wrapping up! We've highlighted #unmetmedicalneed in PKU, from food access to adult care. Your engagement on #shadesofpku made a huge impact. Thank you for raising your voices! #IPKUDAY2025

Today, for #shadesofpku & #IPKUDAY2025, we celebrate the immense power of the PKU Community! 💪 It's where patients & families find unwavering support & understanding. We unite to raise PKU awareness. It`s one of the lightest shades of PKU.

Thank you to patients, families, organizations 🤝, professionals 👩‍⚕️👨‍⚕️, and companies 💊 and their employees for making #IPKUDAY2025 special! Your engagement showed the shades of PKU. Together, we're raising awareness and making a difference! 💪

Happy International PKU Day! 🌍Add #IPKUDAY2025 and show us how you are celebrating. 🥳. Read @official_espku statement about how patients and families drive our advocacy actions: .

📢 Calling adults with PKU! As part of #shadesofpku campaign organised for #IPKUDAY2025 we encourage you to fill this survey 🗣️📝 and raise #adultpkuawareness.

We're amplifying the call for more research on adults with PKU! Their experiences and health status need to be better understood.As part of our #shadesofpku campaign for #IPKUDAY2025, we're raising #adultpkuawareness. Let's push for studies that truly reflect adult life with PKU.

Two Days Left! Nominate a candidate for the Sheila Jones Award! 🏆 🗝️. This is a fantastic opportunity to honor an unpaid individual, group, or patient organization that has made a significant difference. Go to:. ➡️

Today during our #shadesofpku campaign for #IPKUDAY2025 we highlight the inequality in access to various methods of therapy for adults with PKU. 🧐 We emphasize that adults should have access to all methods of therapy including the newest pharmaceutical options. 💊

#IPKUDAY2025 #shadesofpku highlights crucial PKU healthcare transition. EU Guidelines Rec. 25 demands specialized adult care. This #pkuunmetmedicalneed means planned, patient-collaborative transitions are key to avoid lost follow-up. We urge adherence for patient quality of life.

🚨 Registration is NOW OPEN for the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) Conference 2025! 🚨. 👉 Click here to register: See you in Hamburg! 🇩🇪 #ESPKUConference2025 #ESPKU2025 #PKU

📢 7 days left to nominate a candidate for Sheila Jones Award. Don't wonder if the person or organisation you have in mind is a good candidate - just nominate them: .

Today during #shadesofpku organised on the occasion of #IPKUDAY2025 we highlight the need for new doctors to choose #PKU as their career path. It offers research possibilities, opportunity to shape standards of care and being a leader in a care for patients with a rare disease.

On this day of #shadesofpku campaign leading to #IPKUDAY2025 we shine a light on unequal access to pharmaceutical treatments options. This is frustrating for patients.

📅 Less than 2 weeks to #InternationalPKUDay! 🌍. Use the official hashtag #IPKUDAY2025 & logo in your posts!. 🎨 Download the logo: We want to see your support – patients, doctors, orgs & pharma pros! 💪

📢 On #shadesofpku, we're highlighting the urgent need for good PHE monitoring. #IPKUDAY2025.European Guidelines: freq. of blood PHE tests (weekly for infants/pregnancy, monthly for adults), lab results back within 2 working days. Yet delays persist! It must change!

⌛There are just 2 weeks left to nominate a candidate for Sheila Jones Award. Last year Kate Learoyd and Caroline Graham received it for their efforts and advocacy to reimburse Sapropterin in the UK. ✍️ Nominate your candidate for this unique award: 🔗

The PKU Association from the Czech Republic has been fighting for the reimbursement of low-protein food for over a decade. Click the link below and read the statement issued on the occasion of #IPKUDAY2025. These are #shadesofpku and #unmetmedicalnneds .