Happy international #PKUDAY to #PKU communities across Ireland and the globe. Celebrating our community and seeking lifelong care for all children and adults living with #PKU #RareDisease #BrainHealth espku.org/2024/05/20/pku…

If you are a family member of someone with #PKU on the island of Ireland, your voice matters. Please consider participating:👉dcusciencehealth.qualtrics.com/jfe/form/SV_eU… 📢 PLEASE RESHARE TO HELP US REACH MORE FAMILIES #InternationalPKUDay2025 #CommunityDriven #ResearchThatMatters

Does someone in your family have #PKU? Please help us to understand your lived experience by completing the questionnaire below; dcusciencehealth.qualtrics.com/jfe/form/SV_eU… #PKU #ResearchThatMatters #LowProtein #PKUDay2025

Thank you for your generous donations for PKU Association IE €570 raised for new #PKU projects such as the development of our new community website to support children and adults with PKU and their families. We also had the opportunity to help raise awareness at this fun event🙏🏃‍♂️

Last chance to make your voice heard!🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research. 🔐 Confidential & 🤝 Co-created with patients 🔗 Take the survey: shorturl.at/ePVuL 📄 More: shorturl.at/c03db EURORDIS-Rare Diseases Europe

🚀 Call for Papers #pku Lead by Prof. Sacharow Stephanie Boston Children's 🙌Submit by Jan 31, 2026 📌Info: oaepublish.com/specials/jtgg.… 👉Submit: oaecenter.com/login?JournalI…

Some very short, but regular online PKU teaching sessions will start in September. Our first group of teaching sessions will be for 6-8 year old girls. The next group will follow shortly afterwards

*** UPDATE: We made our 1000.00 target. Thank you 🙏🙏***

At ESPKU we strongly believe this document can make traveling especially by flaying ✈️stress - free. To get your copy all you have to do is contact a PKU Association in your country that is the E.S.PKU member.

🚨 New study reveals the hidden burden of PKU in Brazil 🇧🇷: A deep dive into public health data (DATASUS) uncovers gaps in diagnosis, treatment, and long-term care for patients with phenylketonuria. #PKU #RareDiseases #PublicHealth thelancet.com/journals/lanam…

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.

Prof. François Maillot's webinar is now available to view on VIA. Head there now to see his review of the latest literature on adults with PKU. 👉VIA link: vitaflo.co/ee4f40 #EnhancingLivesTogether #Vitaflo #VIA

New paper published about the impact on blood Phe levels of the menstrual cycle in PKU

Whether you're directly involved in PKU management or not, your perspective contributes to a fuller understanding and may inform processes such as access to medicines, service provision + More than one family member per household may participate. Best completed on a laptop/PC🙏

Delighted to have the opportunity to visit “Centre of Public Health and rare and genetic molecular centre ⁦Queen's University Belfast 🎓⁩ ⁦Prof AJ McKnight⁩ thank you on behalf of the #RAIN #CRAG ⁦University College Dublin⁩ ⁦Dr Suja Somanadhan⁩⁩ ⁦⁦RARE Ireland⁩ ⁦UCD School of Nursing, Midwifery & Health Systems⁩

Excited for the PKU community and look forward to the day when everyone gets access to this innovative treatment for #PKU Congratulations to all who made it happen. 👏

🔔 Really important research happening around #PKU #PKUResearch #HaveYourSay

Amazing 372 mile runner Ian Spriggs started y/day in Bristol Fundraising for #PKU community Pls support Ian running btw 4 hospitals (Bris-Birmingham Children’s-Alder Hey & Royal Victoria, Newcastle) in just 10 days Click to sponsor, every little helps 🙏 justgiving.com/page/ian-sprig…

Ian Spriggs, is doing some super human running (372 mile) and will be passing through Birmingham on Thursday morning. He is raising much needed funds for the NSPKU. Please support him - and give him a wave on his way up to Newcastle! justgiving.com/page/ian-sprig…...