VUČIĆ BRINE O NARODU Majke dece obolele od retkih bolesti: Država danas leči svoju decu
Preokret koji roditelji najbolje osećaju dogodio se u Srbiji u poslednjih desetak godina
TL;DR
- Mothers of children with rare diseases in Serbia report substantial improvements in healthcare and treatment accessibility since 2012.
- The establishment of the Fund for Rare Diseases and a shift in state policy have been pivotal in providing access to essential care, including specialized bandages and advanced therapies.
- Cases of epidermolysis bullosa, spinal muscular atrophy (SMA), and Sturge-Weber syndrome are presented, showcasing how systemic support has enabled children to live, develop, and thrive.
- Newer treatments, such as gene therapy gels and expensive medications like Zolgensma, have become available, often through neonatal screening and state funding.
- Parents express gratitude for the state's comprehensive support, which includes financial assistance, institutional access, and medical expertise, marking a departure from the pre-2012 era when such policies were lacking.