espku.org - Profile | ThreadSky | a Reddit-style client for Bluesky

📢 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!

submitted 21 hours ago • 1 comment

⌛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: 🔗 www.espku.org/sheila-jones...

submitted 2 days ago • 0 comments

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_...

submitted 4 days ago • 0 comments

📅 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

submitted 5 days ago • 0 comments

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?

submitted 6 days ago • 0 comments

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_...

submitted 8 days ago • 0 comments

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.

submitted 11 days ago • 0 comments

📢 3 days left to submit an abstract on research and development in PKU for oral presentation during this years's E.S.PKU Professional Meeting in Hamburg. Deadline is June 6th 2025.

submitted 12 days ago • 0 comments

The PKU Family Association on the occasion of #IPKUDAY2025 is organising an event focusing on the importance of the newborn screening. The event will take place in the the mausoleum of Mustafa Kemal Atatürk, founder of modern Turkey. Read more here: www.pku.at/2gl5f8

submitted 13 days ago • 0 comments

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...

submitted 14 days ago • 0 comments

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

submitted 15 days ago • 0 comments

On June 1st, 2025, we launch the 'Shades of PKU', this year's campaign for International PKU Day! 🎉 Get ready to engage: Like 👍, comment 💬, and share 🔁 our posts across your network and other social media channels. Let's amplify every perspective + raise global awareness!

submitted 17 days ago • 0 comments

Many ask: "Do Sheila Jones Award nominees need to be from Europe?" 🤔 NO! 🎉 We accept nominations for unpaid PKU community heroes from anywhere in the world! 🌍 Nominate today: espku.org/sheila-jones...

submitted 19 days ago • 0 comments

Our Secretary, Tobias Hagedorn, participated in the Eurordis Members Meeting #EMM2025 in Riga. The meeting's theme was 'Maximising our Impact.' Discussions focused on key topics related to patient advocacy, self-help, care, and political lobbying for rare diseases.

submitted 21 days ago • 0 comments

🚨 It's #EuropeanMentalHealthAwarenessWeek! 🧠 Mental health isn't just individual, it's shaped by social policies. People with PKU face huge mental health burdens due to lack of proper care & financial strain. #MentalHealth #PKU #RareDisease

submitted 25 days ago • 0 comments

Watch the interview with Tobias Hagedorn, given as part of the #pkulifestories campaign, in which he talks about how he supported his wife, who has #PKU when she was pregnant. 🤰 Click here to watch the interview🎞️: youtube.com/watch?v=cV1a5_

submitted 26 days ago • 0 comments

In 2023 PKU organisation from Turkey won the Sheila Jones Award for their activity and actions after the earthquake in February 2023. Do you know patients organisation that helps people with PKU? 🧬💜 If yes nominate them to this year's Sheila Jones Award: www.espku.org/sheila-jones... 🏆🌍✨

submitted 28 days ago • 0 comments

📣 We are thrilled to announce that the first revision of the European Guidelines on diagnosis & treatment of Phenylketonuria has been punished. This updated resource is a major step forward for PKU care in Europe. 🇪🇺 ➡️ Find the full guidelines here: sciencedirect.com/science/arti...

submitted 31 days ago • 0 comments

Tobias Hagedorn represented E.S.PKI at #PatientBioForum Europe must become a strong biotech hub for patients. We need faster, fairer access to medicines, an EU rare disease plan & stronger patient voice in the EMA. #EuropaBio2025 ⚕️🧬

submitted 33 days ago • 0 comments

In May many EU countries celebrate Mother's Day so we honor women in the #PKU community: 👩‍🍼 Moms of children with PKU 👩‍⚕️ Women with PKU who are moms 🤰 Women with PKU preparing for motherhood We admire their strength. They are daily heroes.

submitted 33 days ago • 0 comments

📢 PKU professionals! Abstract deadline for oral presentations at #ESPKU2025 in Hamburg (Sept 26, 2025) is June 6th! Share your research – especially young researchers! Submit via: espku.org/conferences/... #PKU #Research #HealthProfessionals #CallForAbstracts #RareDiseases #ESPKU2025

submitted 39 days ago • 0 comments

Inspired by Manuela Stecher's PKU advocacy after her sister Ilona's late diagnosis, The Sheila Jones Award continues to honour unpaid volunteers & organizations in the PKU community. Nominate them today! 🙏 espku.org/sheila-jones...

submitted 42 days ago • 0 comments

Welcome Lars Stollenwerk to the PKU MEP Alliance! (previously EU Cross-Party Alliance on PKU)! Together we’ll raise awareness, push policy, and support those living with PKU across Europe. 👩‍⚕️🧬🇪🇺 #PKUMEPALLIANCE

submitted 45 days ago • 0 comments

PKU is often blamed for things it's not responsible for. In #pkulifestories Tobias Hagedorn clears up a one of these misconceptions 🎙️💡 Watch the full interview ▶️ youtu.be/cV1a5_mHyeY?...

submitted 47 days ago • 0 comments

📢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...

submitted 49 days ago • 0 comments

submitted 50 days ago • 0 comments

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!

submitted 52 days ago • 0 comments

Something's coming 👀

submitted 55 days ago • 0 comments

submitted 57 days ago • 0 comments

Do you know someone making a real difference for PKU patients? 🤔 Nominate them for the Sheila Jones Award! 🏆 Patients, families, doctors, dietitians & industry – anyone can nominate! 🙌 Birmingham Children's Hospital decides the winner. Nominate: espku.org/sheila-jones-a

submitted 59 days ago • 0 comments

"PKU is part of my life, not the centre of my life." 💬 – Tobias Hagedorn about his wife`s attitude #pkulifestories Mindset matters. Empower, don’t limit. Raise kids to make informed choices, not fear restrictions. 💪🧠 Watch the whole interview: pku.at/o9q4tw

submitted 61 days ago • 0 comments

📣 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! 💪

submitted 63 days ago • 0 comments

📢 Delegates: Your Input Needed on E.S.PKU Delegates Platform! Your feedback is invaluable! 🙏 Two quick actions needed: ➡️ Living with PKU Survey: Deadline April 22nd. ➡️ Int'l PKU Day Campaign suggestions: Deadline April 21st. Head to the E.S.PKU Delegates platform now! 💪

submitted 66 days ago • 0 comments

We stand with the PKU community in the U.S. Newborn screening saves lives — it must be well-organized, well-funded, and available to every newborn. 🧬 Screen for as many conditions as science allows ⚖️ It’s not a privilege — it’s a human right.

submitted 68 days ago • 0 comments

🌍 Sheila Jones Award nominations are OPEN! 🏆 We're looking for PKU community heroes worldwide. Know someone making a difference? 🤔 Nominate them! 👇 www.espku.org/sheila-jones... Listen who's not eligible 👇

submitted 69 days ago • 0 comments

Nominations for the Sheila Jones Award 2025 are OPEN! 🏆 Know a patient, advocate, caregiver, or patient org making a real impact in the PKU community? 🌍 📽️ E.S.PKU President Eric Lange explains who can be nominated 👇 ➡️ Nominate now: espku.org/sheila-jones...

submitted 70 days ago • 0 comments

Adults with PKU face unique dining challenges. Tobias Hagedorn's #pkulifestories interview highlights the daily management required. It's more than a diet—it's constant vigilance. ⚖️ #adultpkuawareness Watch the interview: pku.at/ill6kp Like, comment and share!

submitted 74 days ago • 0 comments

Today we are celebrating Dr. Kirsten Kiær Ahring 25 years of professional dedication! 👏 Her impact on the #PKU community is invaluable. Thank you!

submitted 76 days ago • 0 comments

Reminder! E.S.PKU abstracts for oral presentations (26.09.25) due 6.06.25. Young researchers welcome! Details: espku.org/conferences/... #ESPKUConference2025 #PKU

submitted 77 days ago • 0 comments

🚨 NEW Hashtag for International PKU Day! From now on, use #IPKUDAY to share your stories, events & support for PKU! 📢 Get the official logo here: espku.org/projects/pku... 🚀 BIG awareness campaign coming soon—stay tuned! 🔔 📩 Questions? Contact us at: [email protected]

submitted 80 days ago • 0 comments

📢 Rare Diseases EU Survey! 🧬 Your input is crucial! ✅ Patients, healthcare pros, researchers, policymakers & all in the rare disease space, participate! ➡️ Shape EU policy! 📅 Deadline: March 2025 🔗 ec.europa.eu/eusurvey/run... #RareDiseases #EUSurvey #PublicHealth

submitted 81 days ago • 0 comments

Last Saturday, E.S.PKU delegates tasted a variety of delicious PKU-friendly dishes! From sweet potato & coconut soup to coconut panna cotta with kiwi & apple confit, the food was a hit with everyone! 🍽️ We can’t wait for the conference! 🙂

submitted 82 days ago • 0 comments

On March 22, 2025, E.S.PKU Delegates met in Hamburg to discuss crucial topics like unmet medical needs, advocacy workshops, and the European PKU survey. We also held our AGM and met with Prof. Dr. Ania C. Muntau. Exciting plans for the International PKU Day campaign!

submitted 84 days ago • 0 comments

submitted 88 days ago • 0 comments

🌟 How to react when someone says they have PKU? Tobias Hagedorn shares his thoughts in the #pkulifestories campaign: 💬 "If you’re interested in a person, it doesn’t matter whether they have PKU or not." Watch the full interview! 🎥👇 🔗 t.co/hNN7rjstaT

submitted 90 days ago • 0 comments

#pkulifestories – Tobias & Christine When Tobias met Christine, she told him she has PKU. Without the internet, learning about it wasn’t easy! 🌍 🎙️In this interview, he shares how he navigated it & supported her. 🎥 Watch: 👉https://pku.at/jkebad

submitted 92 days ago • 0 comments

🎬 Missed yesterday’s premiere of our #pkulifestories interview with Tobias Hagedorn? No worries! Watch it anytime here 👇 www.youtube.com/watch?v=cV1a... Like 👍, comment 💬, and share your thoughts—we’d love to hear from you!

submitted 95 days ago • 0 comments

🚀 The wait is over! Watch our exclusive interview with Tobias Hagedorn as part of #pkulifestories 🎬💡 Click the link, watch, like, and comment now! 👀🔥 📽️ www.youtube.com/watch?v=cV1a...

submitted 96 days ago • 0 comments

Tonight at 8:30 PM (CET), we’re premiering the interview with Tobias Hagedorn! #pkulifestories! 🔥 📌 Set a reminder now! Click here ⬇️ youtu.be/cV1a5_mHyeY?... and hit ‘Notify me’ 🔔 Join us for insights & inspiration! See you at 8:30 PM! ⏳

submitted 96 days ago • 0 comments

🎥Watch a sneak peek of the interview with Tobias Hagedorn recorded for #pkulifestories campaign! pku.at/88e645 ❗️The interview premieres tomorrow, March 12th at 8:30 PM CET. Watch: pku.at/styq6f & hit notifications! #pkulifestories

submitted 97 days ago • 0 comments