Set a reminder now to be sure not to miss the interview with Florentina! #pkulifestories #adultpkuawareness

We have so many amazing women in our PKU community! 💪 Happy International Women's Day! 💐 #InternationalWomensDay2025

We're excited to introduce the new hashtag for International PKU Day 🎉 #IPKUDAY! Watch this space 👀 to stay updated and be the first to get information about this year's campaign for #IPKUDAY2025 🌍💙✨ Stay tuned! 🚀

Something big is coming on Monday! 👀 Get ready for an exciting announcement! 🎉 Make sure you're following the E.S.PKU profile so you don't miss out on all the details. Trust us, you won't want to miss this!

📢On June 1st, 2025 on the occasion of #IPKUDAY2025 we'll launch of 'Shades of PKU' campaign! It'll show all shades of living with PKU + unmet needs of patients with PKU. #shadesofpku Use #IPKUDAY logo in your publications: espku.org/projects/pku-d…

Day 1 of #shadesofpku: Newborn Screening! 👶🔬 Robert Guthrie developed the first #PKU blood test in 1960. Early detection prevents disability & saves costs. Not all EU countries screen for PKU-this is an #pkuunmetmedicalneed. Screen all! Screen refugees up to age 6. #IPKUDAY2025

We're still searching for this year's deserving recipient of the prestigious Sheila Jones Award 🏆, and we need your help! Only unpaid volunteers can be nominated. To nominate go to 👇: espku.org/sheila-jones-a…

Day 2 of #shadesofpku for #IPKUDAY2025: A PKU diagnosis deeply impacts parents & siblings. Parents face anxiety; siblings' needs are often missed. Much inaccurate PKU info online! Act to correct it! Patient groups offer crucial support. All family members need psychological care.

One phone call, one diagnosis, and suddenly, the healthy child you just brought home from the hospital is facing a lifelong battle with a rare genetic disorder. Read Iza's story when her son was diagnosed with PKU. #shadesofpku #IPKUDAY2025 linkedin.com/posts/espku_sh…

📅 Day 4 of #shadesofpku for #IPKUDAY2025 We urge every country to align with PKU care guidelines! 🌍 📣 “Gov’t should ensure reimbursement of special low protein foods & Phe-free/low Phe protein substitutes for all PKU patients.” – Rec. 54 #PKUEuropeanGuidelines #pkuunmetneed

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 linkedin.com/posts/espku_sh…

Nominate your candidate for this unique award. It can be a person, group of people or a patient organisation. Deadline is #IPKUDAY2025

📢 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!

📅 Less than 2 weeks to #InternationalPKUDay! 🌍 Use the official hashtag #IPKUDAY2025 & logo in your posts! 🎨 Download the logo: pku.at/ijd0jw We want to see your support – patients, doctors, orgs & pharma pros! 💪

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.

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.

#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.

Register now! #ESPKUConference2025

PKU acossiaton in Ireland 🇮🇪 is organising an online meeting in celebration of this year's International PKU Day! #IPKUDAY2025 Details below👇