iiinova — where your digital self keeps evolving

Małgorzata Henek @malhen.bsky.social · 23/05/2026

We call adults with PKU from all over the world to fill this questionnaire. The research aims to anwer a question what's really like to live a life with PKU as an adult. There are no wrong answers! Anwer questions honestly.

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 09/05/2026

📢 Mental health is part of PKU care. The new European PKU Guidelines say emotional wellbeing should be discussed at every clinic visit. Don’t be afraid to talk about stress, anxiety or daily challenges. Your voice matters. #PKU #MentalHealth #RareDisease

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 04/05/2026

📢 Today we announce the tittle and theme of this year’s International PKU Day campaign: 🧩 “Traces of PKU” 🧠 Theme: Mental Health Join the conversation and learn more: espku.org/2026/05/04/i... #IPKUDAY2026 #tracesofpku #pkumentalhealth

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 28/02/2026

Nominations for the Sheila Jones Award are now open! 🏆 Nominate a person, group of people or an organization. Click here to nominate: espku.org/sheila-jones...

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 16/03/2026

🌍 On March 14, PKU delegates from across Europe gathered in Copenhagen for E.S.PKU Spring Meeting so far. ✔️ Key topics included advocacy, new PKU therapies, the Home Blood Monitoring Kit, and #IPKUDAY2026 awareness campaign. 🤝 Thank you to the Danish PKU Organization for hosting!

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Małgorzata Henek @malhen.bsky.social · 19/03/2026

Help us transform patients experiences into scientific evidence. If you have #PKU or are parent or carers of person with PKU fill this survey.

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Małgorzata Henek @malhen.bsky.social · 01/01/2026

Wszystkiego dobrego w Nowym Roku 2026! 🎉 Niechaj będzie lepszy od poprzedniego!

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Małgorzata Henek @malhen.bsky.social · 12/08/2025

To be precise I wonder if PKU doctors know that menstrual cycle influences PHE levels and causes them to rise. This shows we really don't know everything about PKU.

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 11/08/2025

The 39th E.S.PKU Conference is officially sold out! For everyone who has sent an inquiry about the conference - if you haven't received a response, you will hear from us shortly ⏳. For those of you who have secured your spot at #ESPKUConference2025, see you in Hamburg! 🇩🇪

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Małgorzata Henek @malhen.bsky.social · 12/08/2025

I would love to read it. I never thought of that. It's really frustrating as these days are hard in general and when I read this research many things became clearer. I wonder how menopause will influence PHE levels and if PKU doctors know about it. My last PKU didn't know about it.

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E.S.PKU @espku.org · 07/07/2025

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

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 17/07/2025

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.

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E.S.PKU @espku.org · 15/07/2025

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

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Małgorzata Henek @malhen.bsky.social · 08/07/2025

Hello my #PKU family! 👋 Can someone tell me how much PHE is in gelatine? 🙏

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Małgorzata Henek @malhen.bsky.social · 28/06/2025

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.

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 23/06/2025

🚨 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

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 08/06/2025

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_...

linkedin.com

#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...

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 05/06/2025

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.

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 01/06/2025

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

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Małgorzata Henek @malhen.bsky.social · 16/05/2025

This document is very important for people with PKU and for professionals taking care of PKUers. It also should be important for all decision makers regarding reimbursement of PKU formulas and low protein food.

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Małgorzata Henek @malhen.bsky.social · 16/05/2025

So last weekend I was in the beautiful Eindhoven, Netherlands and #psveindhoven won! 👏 I've heard they really needed it and today I see they lead the Eredivisie! Congratulations! 👏 Hope they win it this season! 🤞

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Małgorzata Henek @malhen.bsky.social · 16/05/2025

Taka refleksja w związku z kampanią wyborczą. Uważam, iż powinny być wymogi dla kandydatów na Prezydenta RP wykształcenie wyższe, znajomość języków obcych: język angielski obowiązkowo, wysoki poziom kultury osobistej, nie sprzyjanie obcym państwom.

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Małgorzata Henek @malhen.bsky.social · 02/05/2025

I'm looking forward to working with Lars!

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E.S.PKU @espku.org · 30/04/2025

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?...

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Reposted by Małgorzata Henek

E.S.PKU @espku.org · 28/04/2025

📢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...

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Małgorzata Henek @malhen.bsky.social · 22/04/2025

Any ideas on what's coming? 🤔🧐

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Małgorzata Henek @malhen.bsky.social · 16/04/2025

We take so many things for granted and it would never cross our minds that that something would stop being available. Newborn screening safes lifes and changes it for the better. I stand with the USA PKU Community and hope things will be better soon.

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Małgorzata Henek @malhen.bsky.social · 16/04/2025

The quality of care of adults with PKU is different from the quality of care of children with PKU. The quality of care of adults with PKU varies throughout Europe. Adult life with PKU has its challenges and we need adults to tell us about them and raise #adultpkuawareness

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Małgorzata Henek @malhen.bsky.social · 01/04/2025

Congratulations Kirsten‼️👏🥳 It's wonderful that you're part of our community‼️Your dedication is inspiring and you're wonderful human being‼️😘

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Małgorzata Henek @malhen.bsky.social · 30/03/2025

Yesterday's meeting for adults with #PKU in Cracow was great! Interesting lectures by our doctor and dietitian and cooking PKU versions of Polish Easter dishes proved it can be easy, joyful and tasty! #adultPKUawareness

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Małgorzata Henek @malhen.bsky.social · 29/03/2025

If you haven't filled out EU survey on #rarediseases do it now! Deadline is 31st March 2025

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E.S.PKU @espku.org · 20/03/2025

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Małgorzata Henek @malhen.bsky.social · 19/03/2025

📅 March 29, Kraków – 1st ever #PKU meeting just for adults! What’s planned? 🔹 PKU doctor & dietitian lectures 🏥 🔹 Easter cooking workshop 🍽️ 👨‍⚕️ Organized by: The Adult Metabolic Clinic of the University Hospital in Kraków & Vitalfo. #adultpkuawaremess

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Małgorzata Henek @malhen.bsky.social · 17/03/2025

If you want I can research for it tomorrow as now it's a bit too late for me. It's been a long day.

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Małgorzata Henek @malhen.bsky.social · 13/03/2025

What a brilliant interview! If you missed it find a time to watch it. It's soo worth it! #pkulifestories

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Małgorzata Henek @malhen.bsky.social · 12/03/2025

The interview with Tobias Hagedorn premieres tonight! Set a reminder as you can't miss it! #pkulifestories

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Małgorzata Henek @malhen.bsky.social · 10/03/2025

New interview filmed for the #pkulifestories premieres on Wednesday evening. You can't miss it! Go to the link below, set up notification and see you on Wednesday at 20:30 CET.

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Małgorzata Henek @malhen.bsky.social · 07/03/2025

EU Parliament is reviewing many regulations including those relating to the rare diseases. Their final shape will influence the lives of ppl with #PKU that's why it's so important for the entire PKU community to participate in this survey! Be heard! Fill this survey now!

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Małgorzata Henek @malhen.bsky.social · 06/03/2025

Today I've had my first visit at the adult #PKU clinic. The professionalism and enthusiasm of doctor and dietician is very refreshing. I've had comprehensive tests so I know the condition of my body and whether I should take any additional supplements. #adultpkuawareness

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Małgorzata Henek @malhen.bsky.social · 05/03/2025

The nominations for this year's Sheila Jones Award are open. Don't be afraid to nominate a candidate. Go to the dedicated link which you'll find below, submit a nomination and tell us this person's story.

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Donald Tusk @donald-tusk.bsky.social · 28/02/2025

Dear Volodymyr Zelenskyy, dear Ukrainian friends, you are not alone.

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Małgorzata Henek @malhen.bsky.social · 28/02/2025

Happy Rare Disease Day! 💜 Wszystkiego najlepszego w Dniu Chorób Rzadkich! 💜 W Polsce z chorobami rzadkimi zmaga się dwa miliony ludzi. Należy zapewnić im jak najlepszą opiekę medyczną, dostęp do najnowszych metod leczenia oraz wsparcie finansowe oraz społeczne i wytchnieniowe.

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Małgorzata Henek @malhen.bsky.social · 25/02/2025

Gdyby była potrzeba możemy pomóc w digitalizacji jeśli oczywiście kasety działają.

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Małgorzata Henek @malhen.bsky.social · 25/02/2025

Będziemy bardzo wdzięczni! ♥️

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Małgorzata Henek @malhen.bsky.social · 25/02/2025

He'd be 38 years old today....😞 It's such a hard day. He left, we've stayed....

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Małgorzata Henek @malhen.bsky.social · 25/02/2025

Jestem chętna do wysłuchania wszystkiego gdy będzie już zdigitalizowane. Jestem pewna, że nie tylko ja będę chetna.

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Małgorzata Henek @malhen.bsky.social · 25/02/2025

Panie i Panowie! To jest najprawdziwszy rarytas #PKU I am sure I am not alone when I say this that I would love to be able to listen to those tapes! Wow! Just wow! @espku.org

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Małgorzata Henek @malhen.bsky.social · 25/02/2025

I am delighted as well! 🤩 Still no idea what to do with them?

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