PKU udruženje Srbije

28/12/2025

Budite zdravi, srećni i zadovoljni tokom cele 2026.godine! 🍀🙂

04/12/2025

Upoznajte Mariu Kozon, odraslu PKU pacijentkinju!

🚀 The moment has come! We’re premiering our inspiring interview with Maria Kozon, an adult living with PKU, as part of the campaign! 🎬

You don’t want to miss this—Maria shares insights, real-life experiences, and motivation that everyone should hear. 💡

👇 Watch here:
https://youtu.be/PkLqKxCrJcs?si=YmFPRY0iB3Ag_9an

Please like 👍, comment 💬, and share ↗️ to help spread awareness. 💪

03/12/2025

🍀🍀🍀

Today, as we continue the relaunch of our Life of Adults with PKU campaign, we want to take a moment to wish a Happy 🎉💙 to everyone who celebrates it!

This day is a reminder of the 💪 strength, ❤️‍🔥 resilience, and ✨ determination of the PKU community.

28/11/2025

📌 Capturing the Full Picture: Unmet Medical Needs in PKU

One year ago, the Joint Paper on Unmet Medical Needs in PKU was published — a milestone document bringing essential insights to EU and national policy discussions. It clearly shows the reality of living with PKU and highlights many unmet medical needs that are still not fully recognised.

In the coming weeks, we will be sharing the key highlights and most important messages from this publication 🧩

👉 Follow us to stay updated and make sure you don’t miss these crucial insights!

28/11/2025

, Kopenhagen, Danska, od 22-25 oktobra 2026!

📢 Save the Date!

We are excited to announce that the 40th E.S.PKU Conference will take place in Copenhagen, Denmark 🇩🇰 from 22–25 October 2026!

This milestone event will be proudly organised by our member organisation from Denmark, bringing together experts, families, and the PKU community from across Europe and beyond. 🌍

Stay tuned for more details — we can’t wait to see you in Copenhagen!

20/11/2025

Danas je Međunarodni dan deteta!

Ustanovljen je od strane Generalne skupštine Ujedinjenih nacija, 1954.godine.

19/11/2025

Today E.S.PKU President Eric Lange is participating in the conference 'Humanidades médicas en diálogo: en torno a la figura del paciente," a unique forum bringing together patients, healthcare professionals, and medical humanities scholars to reflect on what it truly means to be a patient in contemporary healthcare.

Mr Lange took part in a roundtable on Patient and Public Involvement (PPI) alongside Antoni Montserrat Moliner and Rafael Álvarez Pascual. They offered various perspectives on this subject.

Eric Lange shared key actions from the European PKU community, including:
📄 the development of scientific papers,
🔍 mapping gaps in care across Europe,
📣 launching calls to action,
📘 the publication of the first European PKU guidelines, followed by strong engagement from the professional

A central message emerging from the dialogue is that patients carry the deepest knowledge of their own condition. Their lived experience is essential. 🧠💬

It was emphasized how crucial it is for patients to share their stories—the narratives that describe their lived experience with PKU. These stories are powerful tools that strengthen advocacy efforts and help shape better policies, awareness, and care. 📢✨

This conference is a strong reminder that medical progress, ethical reflection, and effective public health decisions all improve when the patient’s voice remains at the center.

02/11/2025

November is Movember!
"Health for men with PKU isn’t just about managing diet or medication — it’s deeply connected to mental health. Constant self-control, social limitations, and the pressure to “feel normal” can lead to frustration, anxiety, or low mood. That’s why psychological support, community connection, and open dialogue are just as vital as medical care".

"Zdravlje muškaraca s PKU ne odnosi se samo na kontrolisanje ishrane ili lekovima - duboko je povezano s mentalnim zdravljem. Stalna samokontrola, društvena ograničenja i pritisak da se "osećamo normalno" mogu dovesti do frustracije, anksioznosti ili lošeg raspoloženja. Zato su psihološka podrška, povezanost s zajednicom i otvoreni dijalog jednako važni kao i medicinska nega."

November is Movember! Movember is a reminder that men’s health deserves attention, understanding, and action.
Men often prioritize work, family, and responsibility — but true strength also means taking care of yourself: your heart, your mind, and your body.

Good health isn’t just about feeling fine today; it’s about preventing problems before they start.

Here’s what every man should keep an eye on:
🩺 Blood pressure and cholesterol – monitor regularly to protect heart health.
🧬 Blood sugar – early detection of diabetes can prevent long-term complications.
🦠 Cancer screenings – prostate and colon cancer checks from around age 45 (earlier with family history).
⚖️ Weight and waist circumference – maintaining a healthy body composition supports hormonal and cardiovascular balance.
🧠 Mental well-being – talk openly about stress, anxiety, or depression; seeking help is a sign of strength.
💤 Sleep quality – consistent, restful sleep supports metabolism, focus, and recovery.
🥗 Nutrition and exercise – balanced meals, movement, and hydration are everyday medicine.

For some men, maintaining health means managing even more — like those living with Phenylketonuria (PKU), a rare inherited metabolic disorder. Men with PKU must carefully control their intake of phenylalanine (an amino acid found in protein) to protect brain function, mood, and concentration. They rely on specialized diets, medical nutrition formulas, and in some cases pharmacological treatment to help regulate Phe levels.

But health for men with PKU isn’t just about managing diet or medication — it’s deeply connected to mental health. Constant self-control, social limitations, and the pressure to “feel normal” can lead to frustration, anxiety, or low mood. That’s why psychological support, community connection, and open dialogue are just as vital as medical care.

This Movember, let’s broaden what we mean by men’s health. 👨🧔‍♂️👨‍🦳

It’s not just about one disease or one campaign — it’s about supporting every man, from those facing heart risks or burnout to those navigating rare metabolic conditions like PKU.

✅️ Healthy men build healthy families and stronger communities.

🔄 Share this post to raise awareness — because when we talk about men’s health, we save lives, open minds, and build understanding for all.

24/10/2025

Ove nedelje se obeležava Nedelja nevidljivih invaliditeta— vreme je za podizanje svesti o stanjima i izazovima koji možda nisu vidljivi drugima, ali duboko pogađaju jedan koji sa njima žive svi.

🔹 Šta je nevidljiva bolest?

Nevidljiva bolest je medicinsko stanje koje se ne može lako videti ili poznati spolja. Simptomi su često skriveni — fizički, kognitivni ili metabolički — ali značajno utiču na svakodnevni život osobe.

🔹 Šta je nevidljiv invaliditet?

Nevidljivi invaliditet se odnosi na funkcionalna ograničenja uzrokovana takvim stanjem. Kako nisu spolja vidljiva, ova ograničenja mogu uticati na učenje, koncentraciju, pokretljivost, komunikaciju ili opšte blagostanje.

🟢 Fenilketonurija (PKU) je jedan primer nevidljive bolesti.
Ljudi koji žive sa PKU mogu izgledati potpuno zdravo, ali povišeni nivoi fenilalanina — ako se ne leče ili loše kontrolišu — mogu izazvati teška neurološka i kognitivna oštećenja. Uprkos ovim značajnim rizicima, efekti nisu odmah vidljivi drugima.

⚖ Kako funkcioniše prepoznavanje invaliditeta kod fenilketonurije (PKU)
U mnogim zemljama, pristup socijalnoj i finansijskoj podršci zavisi od zvaničnih sistema za procenu invaliditeta. Međutim, pošto simptomi PKU nisu vidljivi, mnogi pacijenti ne ispunjavaju tradicionalne kriterijume za prepoznavanje invaliditeta. Ovi okviri se često oslanjaju na vidljiva ili fizička oštećenja, uključujući sposobnost obavljanja lakih i osnovnih svakodnevnih aktivnosti — i stoga ne uspevaju da obustave stvarne, dugoročne metaboličke uticaje.

💬 Neophodno je da se za procenu sistema invaliditeta razvijaju kako bi odražavali savremeno medicinsko razumevanje i stvarnost života sa nevidljivim stanjima.
Prepoznavanje i podrška treba da se zasnivaju na funkcionalnom uticaju i zdravstvenim rizicima, a ne samo na vidljivim znacima!

This week marks Invisible Disabilities Week — a time to raise awareness of conditions and challenges that may not be visible to others, yet deeply affect those who live with them every day.

🔹 What is an invisible disease?
An invisible disease is a medical condition that cannot be easily seen or recognized from the outside. Symptoms are often hidden — physical, cognitive, or metabolic — but they significantly impact a person’s daily life.

🔹 What is an invisible disability?
An invisible disability refers to functional limitations caused by such conditions. Although not outwardly visible, these limitations can affect learning, concentration, mobility, communication, or overall well-being.

🟢 Phenylketonuria (PKU) is one example of an invisible disease.
People living with PKU may appear completely healthy, but elevated levels of phenylalanine — if untreated or poorly controlled — can cause severe neurological and cognitive damage. Despite these serious risks, the effects are not immediately visible to others.

⚖️ How disability recognition works for PKU
In many countries, access to social and financial support depends on official disability assessment systems. However, because PKU’s symptoms are not visible, many patients do not meet the traditional criteria for disability recognition. These frameworks often rely on observable or physical impairments including ability to preform easy and basic every day activities — and therefore fail to capture the real, long-term impact of invisible and metabolic disorders.

💬 It is essential that disability evaluation systems evolve to reflect modern medical understanding and the realities of living with invisible conditions.
Recognition and support should be based on functional impact and health risks, not only on visible signs.

Let’s use this week to make the invisible visible — through awareness, advocacy, and inclusive policy change.

22/10/2025

"Uprkos napretku u ranom lečenju i posebnoj ishrani, još uvek premalo znamo o dugoročnim efektima fenilketonurije u odraslom dobu. Vreme je da se istraživački napori usmere na odrasle koji žive sa fenilketonurijom kako bi se razumelo njihovo kognitivno, emocionalno i fizičko blagostanje. Snažno podstičemo odrasle pacijente da daju saglasnost za učestvovanje u istraživanjima kad god im se ukaže prilika"!

At the , we discussed the lifelong impact of phenylketonuria (PKU). The slide below perfectly illustrates what decades of research have taught us — and what still remains unknown.

🧒 Infants often show severe developmental delay, microcephaly, seizures, behavioural and growth problems if untreated.
👧 Children and adolescents may struggle with working memory, attention, and behavioural challenges.
🧑‍🧠 Adolescents and adults experience a range of neuropsychological and psychosocial difficulties — issues with information processing, inhibition, motor control, anxiety, depression, mood regulation, and even bone and metabolic health.
👵 But when it comes to elderly patients, one word stands out: mystery.

Despite advances in early treatment and dietary management, we still know far too little about the long-term effects of PKU in adulthood and later life.

💡 It is time to focus research efforts on adults living with PKU — to understand their cognitive, emotional, and physical wellbeing.

🧬 We strongly encourage PKU patients, especially adults, to take part in research and to give consent for participation whenever possible.
Every participant helps move our understanding forward and ensures that future care addresses the whole lifespan of people with PKU.

Let’s close the knowledge gap — together.

29/09/2025

Jedinstvena je prilika biti u društvu ljudi koji su toliko mnogo doprineli na polju fenilketonurije. O fenilketonuriji uvek ima mnogo da se kaže i krug se nikada ne zatvara. Istraživanja su konstantna, nove mogućnosti su tu i nada postoji.

Ove godine je delegacija PKU udruženja Srbije prisustvovala E.S.PKU Konferenciji u proširenom sastavu i veoma smo zahvalni na tome!


It is a unique opportunity to be in the company of people who have contributed so much to the field of phenylketonuria. There is always more to say about phenylketonuria and the circle never closes. Research is constant, new possibilities are there and there is hope.

This year, the delegation of the PKU Association of Serbia attended the E.S.PKU Conference in an expanded composition, and we are very grateful for that!

29/09/2025

Na zatvaranju ovogodišnje E.S. PKU Konferencije, zvanična zastava Konferencije predata je od Nemačke PKU organizacije njihovim divnim kolegama iz PKU organizacije u Danskoj!
Ova simbolična primopredaja ne predstavlja samo prenos odgovornosti, već i saradnju i jedinstvo PKU zajednica širom Evrope!
Hvala DIG PKU e.V. na gostoprimstvu i sa uzbuđenjem iščekujemo sledeće okupljanje u Kopenhagenu! 🇩🇰

At the closing of this year’s E.S.PKU Conference, the official conference flag was passed from German PKU organisation to their wonderful colleagues at the PKU organisation in Denmark 🇩🇰.

This symbolic handover represents not just the passing of responsibility, but also the unity and collaboration of the PKU community across Europe 🤝.

We are grateful for an inspiring event hosted by DIG PKU e.V. and are already looking forward with excitement to next year’s gathering: the in Copenhagen! 🇩🇰