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
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
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 for celebrating #IPKUDAY2025 🙂 We love seeing the PKU Community coming together to celebrate and raise awareness.
The image features the feet of a newborn, with text highlighting the lack of newborn screening for phenylketonuria (PKU) in some European countries. There is a logo for the European Society for PKU and promotional hashtags related to PKU
28th June and I’m thinking today of the massive advances made in the treatment of PKU in Ireland over the last 50+ years. But also I’m thinking of those parts of the world where people are unable to access proper treatment and are without automatic screening at birth.
#ipkuday2025 #phenylketonuria
Happy International PKU Day! “Hope is a waking dream.” – Aristotle / Access to care is something to work on + hope for in order to realize our shared, waking dream. For many of us + families like mine with #PKU. Read my column to mark the day here -> jjbrownauthor.com/internationa... #IPKUDay2025
Happy International PKU Day! 🌍Add #IPKUDAY2025 and show us how you are celebrating. 🥳
Read @espku.org statement about how patients and families drive their advocacy actions:
www.espku.org/2025/06/28/s...
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:
➡️ espku.org/sheila-jones...
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. 💊
PKU acossiaton in Ireland 🇮🇪 is organising an online meeting in celebration of this year's International PKU Day! #IPKUDAY2025 Details below👇
#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: espku.org/conferences/...
See you in Hamburg! 🇩🇪 #ESPKUConference2025 #ESPKU2025 #PKU
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: www.pku.at/ijd0jw
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!
Nominate your candidate for this unique award. It can be a person, group of people or a patient organisation. Deadline is #IPKUDAY2025
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?
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...
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!
📣 Last year's 'The Life of adults with PKU' campaign highlighted adult PKU life. Now, adults, share your REALITIES! Describe diet struggles, healthcare issues, social limits & ACHIEVEMENTS! 🧐 Use #adultpkuawareness to demand equal care! Your stories matter! 💪
