Udruzenje PKU BiH

10/02/2026

🌍Dan rijetkih bolesti 💜
[28. februar- dan kada govorimo glasnije o onima koje sistem cesto ne cuje]
U susret Danu rijetkih bolesti, globalnoj incijativi koja okuplja milijone ljudi sirom svijeta, podsjecamo koliko su pravovremena dijagnoza, dostupna terapija i stalna podrska presudni za osobe koje zive sa rijetkim bolestima.
Medju njima su i osobe sa feniketonurijom (PKU)- rijetkim genetskim metabolickim poremecajem koji zahtjeva rano otkrivanje,dozivotno pracenje ishrane i kontinuiranu podrsku zdravstvenog sistema i zajednice.
💜 Dan rijetkih bolesti
podsjeca nas da: ➡️
➡️ rijetko ne znaci nevidljivo
➡️rijetko znaci da zajedno mozemo vise
Zasto je vazno govoriti o tome?
Jer put do dijagnoze ne smije trajati.
Jer terapija i specijalna prehrana moraju biti dostupne svima.
Jer u nasoj zemlji jos uvijek ne postoji zakon o rijetkim bolestima-a osobe koje s njima zive zasluzuju sistemsku zastitu, jasno definisana prava i kontinuiranu brigu.
Kako mozete biti dio promjene:
💜podjeli ovu objavu
💜razgovaraj o PKU i drugim rijetkim bolestima
💜podrzite incijative za zakonska rijesenja I bolju zdravstvenu zastitu
💜budite glas onih koji se bore svakoga dana
Zajedno mozemo graditi drustvo u kojem rijetke bolesti nisu na margini- vec u fokusu zdravstvenog sistema i javnih politika.


Awareness 💜

04/02/2026

Danas mislimo na sve koji se bore, na one koji su pobjedili i na one koje nikada necemo zaboraviti.💜

26/01/2026

🫶

Ne smije se zanemariti da na čelu većine udruženja stoje bolesni ljudi, pacijenti, oni koji su i sami umorni od bitke za vlastiti život, a tako jako, snažno biju bitke za sve nas

28/06/2025

01/06/2025

It's day one of our 'Shades of PKU' campaign, and we're starting with a crucial topic: Newborn Screening! 👶🔬

In 1960, Robert Guthrie developed the first blood test to detect Phenylketonuria (PKU). This innovative screening was gradually adopted across many European countries, though the pace of implementation varied significantly. Today, newborn screening remains the primary method for diagnosing PKU, a testament to its profound benefits.

Early detection through newborn screening is paramount. It allows prompt therapeutic intervention, preventing severe outcomes, and enables affected children to reach their full potential. From an economic perspective, newborn screening is highly cost-effective, as the lifelong care for individuals with multi-dimensional disabilities resulting from undiagnosed PKU far exceeds the cost of screening and early treatment. 💰🛡️

Despite these undeniable advantages, persists: not all European countries currently screen for PKU.

We urgently call upon all European nations to implement comprehensive newborn screening programs for Phenylketonuria and encourage those already doing so to maintain their high standards. The integrity and widespread application of newborn screening are vital for the overall well-being of our societies.

While we don't foresee any European country considering the termination or reduction of newborn screening standards, we believe it's essential to emphasize the importance of this ongoing commitment. For countries facing financial constraints that hinder the establishment of screening programs, we suggest exploring cooperative initiatives with neighboring countries that possess the necessary laboratory infrastructure. 🤝🌍

We want to address the risk of missed PKU diagnoses among immigrants and refugees arriving from countries without established or recently implemented newborn screening programs. In alignment with the European PKU Guidelines, countries receiving these populations must screen all new arrivals for PKU up to the age of six. This measure ensures that no child is left behind. 💪

28/04/2025

Peticija za bolje zdravstvo u Bosni i Hercegovini Svi smo bili, jesmo ili ćemo biti pacijenti. Zato zdravlje mora biti prioritet! Mi, pacijenti i porodice oboljelih širom Bosne i Hercegovine, svakodnevno se suočavamo s teškom stvarnošću. Naš zdravstveni sistem je pred urušavanjem. Nedostatak...

28/02/2025

28/02/2025

27/02/2025

Kad se male ruke sloze, mnogo poruka podrske, zagrljaja, osmijeha,nade hvala Vam dragi nasi..
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za rijetke bolesti FBIH
BIH