Transfer of know-how and creation of Cystic Fibrosis Centre to ensure better care for Cystic Fibrosis patients in Ivano-Frankivsk Region

Cystic Fibrosis (CF) is an incurable orphan genetic disease that shortens the life of CF patients and has a big influence on daily quality of life of CF families.
This project will change the opportunities for CF patients - will give them, as the disadvantaged group, equal opportunities as their healthy friends have. It will intensify the cooperation between regions of SK and UA in case of this rare disease.
Main problems in Ivano-Frankivsk region:
1. there are not adequate conditions for CF care and CF patients have to travel to another places in UA, where they have to pay for CF care
2. lack of knowledge and awareness about this rare disease among healthcare professionals. CF families and public
3. insufficient fundings for medicines, equipments and tools
The situation in Slovakia is better, but still need more education, equipment and access to new therapies.
Thanks to the project we:
- will create a specialized CF Center with CF Patients Registry
- will train healthcare professionals from UA and SK in diagnostics, treatment, physiotherapy, nutrition and daily care for CF through workshops, training, conferences and publications
- will ensure medical tools and equipment for CF patients home care and for CF Centers
- will create conditions for successful lobbing and advocacy to improve the situation of CF in UA and SK to ensure better financing for appropriate care, treatment and access to new therapies.
Focusing on long term effect and sustainability in all project activities we want to achieve our overall objective to ensure higher quality of life for CF patients and their family members in Slovakia and Ukraine.
Creation of CF Centre with required medical equipment and well educated CF team in Ivano-Frankivsk Children´s Hospital means creation of adequate conditions for long- term improvement of health, social and public services for CF patients and their families.
Thanks to early and correct diagnosis we could save CF patients before premature death.