24.04.2026
We received good news from the Public Union “Rare Diseases of Ukraine”: The Ministry of Health of Ukraine has updated the composition of the group of experts and specialists involved in the work of the Permanent Working Group of the Ministry of Health on sectoral support for procurement in specific areas. From now on, the group includes representatives of the Public Union “Rare Diseases of Ukraine”:
04.04.2026
26.03.2026
16.03.2026
10.03.2026
10.03.2026
From March 5 to 7, 2026, the 13th South Eastern European Cystic Fibrosis Conference (SEEC 2026) took place in the picturesque Georgian city of Tbilisi. “This international event brings together healthcare professionals, researchers, patient organizations, and advocates from across Europe who specialize in cystic fibrosis to exchange knowledge, foster innovation, and strengthen regional collaboration in cystic fibrosis care and research.
04.03.2026
02.03.2026
02.12.2025
21.11.2025
01.08.2025
Cystic fibrosis is not just about medication, physiotherapy and regular visits to the doctor. It is about living every day with a disease that often goes unnoticed by those around you, but constantly affects your physical and emotional state. One of the biggest challenges for many patients is having to explain to others over and over again what cystic fibrosis is, why you cough, why you have a disability certificate, why it is difficult to gain weight or why sometimes you just don’t have enough energy.
23.01.2025
20.12.2024
03.04.2024
15.12.2025
This meme image, often seen on social media, may bring a smile — but behind it lie significant changes in the lives of people with cystic fibrosis. And these changes require a new approach. Before the advent of gene modulators, life with cystic fibrosis meant a constant struggle for every kilogram. Food was poorly absorbed, energy was lacking, and being underweight made it harder to fight lung infections. Treatment protocols clearly stated that a person with CF should consume 1.5–2 times more calories than a healthy individual. Therefore, there were no dietary restrictions — you could and should eat whenever you wanted and as much as you wanted.
26.11.2025
23.05.2025
04.05.2025
17.04.2025