Udruzenje PKU BiH

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..
#
za rijetke bolesti FBIH
BIH

27/02/2025

Svaki život je bitan. A vaša podrška je važnija nego što možete zamisliti. Bez podrške cijele zajednice, udruga, organizacija i bez
nepokolebljivom predanošću pacijenata, njegovatelja i zagovornika, napredak u skrbi za rijetke bolesti ne bi bio moguć. Promjena se događa kada smo zajedno - kada istraživači, kreatori politike i zdravstveni radnici slušaju i uče od onih koji žive sa stanjima kao što je plućna hipertenzija (PH).

💙 Svaki trud se računa. Svaki glas je važan. I svaki naš korak približava nas svijetu u kojem su rana dijagnoza, učinkoviti tretmani i skrb usmjerena na pacijenta standard, a ne iznimka.

Ovog Dana rijetkih bolesti, ujedinimo se kako bismo podigli svijest, zahtijevali akciju i stvorili budućnost u kojoj se nijedan pacijent ne osjeća nevidljivo. Vaša podrška može promijeniti živote. 💜

Svaki život je važan, svaki je život jedinstven, svaki život je dragocjen.

➡ www.phaeurope.org
➡ www.phbih.org

24/02/2025

Regionala kampanja povodom dana rijetkih bolesti 2025.
Zagrljaj mocniji od osmijeha,snazniji od rijeci 💛💙
# Savez za rijetke bolesti Federacije BiH
BiH