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.

Happy International PKU Day! #IPKUDAY2025 🌍🎉 Let's celebrate what we have. However PKU is not a solved problem. All European countries have gaps in care that need improvement. I recommend @espku.org
campaign #shadesofpku to see how life with PKU looks like in Europe.

Living with PKU: Survey on Stress, Diet, & Cognitive Wellbeing Hi, we’re a small team of passionate medical and biomolecular science students taking part in the Virtuome 2025 Community Impact Project — an exciting research programme, and we aim to create solution...

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

docs.google.com/forms/d/e/1F...

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.

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.

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.

📢 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!

As part of the Shades of PKU #shadesofpku campaign for International PKU Day #IPKUDAY2025, we are sharing a statement from the Czech PKU Association that has been tirelessly advocating for over a… | ... As part of the Shades of PKU #shadesofpku campaign for International PKU Day #IPKUDAY2025, we are sharing a statement from the Czech PKU Association that has been tirelessly advocating for over a dec...

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_...

📅 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

Mr Tobias Hagedorn,
@official_espku
Secretary, raised a point that the word 'diet' doesn't fully present what the therapy for PKU is. He suggested that we should use 'nutritional therapy.' On the 3rd day of the #shadesofpku campaign for #IPKUDAY2025 we ask you what do you think?

#shadesofpku #ipkuday2025 | European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria Imagine your world crumbling in an instant. One phone call 📞, one diagnosis 🧬, and suddenly, the healthy child you just brought home is facing a lifelong battle. This was Iza's family reality when...

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

www.linkedin.com/posts/espku_...

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.

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

📢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...