Małgorzata Henek

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.

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! 🇩🇪

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.

The influence of menstrual cycle on metabolic control and diet in patients with phenylketonuria - Orphanet Journal of Rare Diseases Based on experiences from everyday clinical practice and indications from the literature, the menstrual cycle might impact on metabolic stability in patients with urea cycle disorders and organic acid...

Does the menstrual cycle influence PHE levels? 🤔 The newest research shows it does. #adultpkuawareness Female PKU is not only Maternal PKU Syndrome. 🔍 Read the research here: ojrd.biomedcentral.com/articles/10....

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

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

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

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.

🚨 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

#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

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.

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! 🤞

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.

I'm looking forward to working with Lars!

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?...

📢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...

Any ideas on what's coming? 🤔🧐

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.

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

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

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

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

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.

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

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