Око 400 оболелих од цистичне фиброзе у Србији, без лека просечни животни век 25 година
У Србији око 400 пацијената болује од цистичне фиброзе, а како је рекла председница Удружења за помоћ и подршку оболелима од цистичне фиброзе Дајана Рашкај, скупоцени лек „Трикафта” који пацијентима обезбеђује држава, оболелима пружа лагоднији живот и будућност.
TL;DR
- Around 400 patients in Serbia have cystic fibrosis, a rare genetic disease.
- The drug 'Trikafta' is being provided by the state, significantly improving patients' quality of life and future prospects.
- Cystic fibrosis causes thick mucus that damages the lungs and digestive system.
- Before 2012, rare diseases were not treated in Serbia, and life expectancy for cystic fibrosis patients was around 25 years.
- Initiatives by President Aleksandar Vučić and his wife Tamara have led to the treatment of over 42 rare disease diagnoses, including cystic fibrosis.
- Newborn screening for cystic fibrosis and other rare diseases is now available.
- The Republic Fund for Health Insurance plays a key role in providing these treatments.
- Serbia is among the first countries to introduce and provide 'Trikafta' therapy.
- The Office for Rare Diseases, also established on President Vučić's initiative, provides support to affected individuals.
- Patients and their families previously faced a constant struggle against the disease, living in fear and relying on frequent hospital visits and therapies.