Odborníci apelujú na politikov, aby riešili pacientov so zriedkavými ochoreniami

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📰 Slovakia

Odborníci apelujú na politikov, aby riešili pacientov so zriedkavými ochoreniami 07.05.2026

SME.sk

Pacientske organizácie v rámci iniciatívy Zrnko času vyzývajú politikov na urýchlenie dostupnosti liečby a skrátenie diagnostických procesov pre približne 300 000 pacientov so zriedkavými ochoreniami na Slovensku. Podpredsedníčka organizácie Belasý motýľ, Andrea Madunová, zdôrazňuje potrebu včasného podania liečby, kým je stav pacienta najlepší, aby sa zabránilo zhoršeniu. Iniciatíva zahŕňa aj verejnosť prostredníctvom interaktívneho kvízu, ktorý má zvýšiť povedomie o problémoch pacientov a motivovať ich k apelu na politikov. Na Slovensku je známych 7000 typov zriedkavých chorôb, z ktorých väčšina má genetický pôvod a len malá časť je liečiteľná. Pacienti v priemere čakajú päť rokov na diagnózu a 23,5 mesiaca na liečbu, pričom na Slovensku čaká 82 liekov na rozhodnutie o úhradách, z čoho viac ako tretina sú lieky na zriedkavé ochorenia.

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