ZBOG BLOKADA NISMO MOGLI NA TERAPIJU: Majka dečaka obolelog od cistične fibroze o pomoći države u le
Inicijativom predsednika Vučića Srbija je među prvima u regionu gde je obolelima obezbeđen lek trifkata.
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TL;DR
- Serbia now treats 42 rare diseases, a significant increase from zero before 2012.
- Currently, 930 patients with various rare diseases, including cystic fibrosis, are treated at the state's expense.
- The budget for rare diseases has been increased, providing access to three innovative therapies, including for cystic fibrosis, spinal muscular atrophy, and epidermolysis bullosa.
- Newborn screening allows for early diagnosis and immediate therapy, reducing disease progression.
- Dajana's son, diagnosed with cystic fibrosis at a young age, has shown significant weight gain since starting innovative therapy.
- Past governments offered little support, leaving patients and doctors to struggle independently.
- The establishment of an office for rare diseases, initiated by the president, has provided much-needed support and education.
- Road blockades created significant difficulties for patients trying to access treatment, causing fear and delays.
- Instances of discrimination by medical professionals against patients based on differing political views were reported.
- The government is working on a "parent-caregiver" law to provide financial and insurance benefits to parents caring for children with rare diseases.