Printouts, CF Registry, lobbying
Printouts, CF registry and lobbying will create conditions for successful lobbying and advocacy to improve the situation of CF in Ukraine and Slovakia to ensure better financing for appropriate care, treatment and access to new therapies.
This will allow monitoring the state of health and the needs of individual patients.
Publications about CF disease, sweet test diagnostics, daily care of CF patients and nutrition for CF patients you can find here.
By active lobbing we want in particular, contribute to improving the funding of medicines of CF patients.
In UA side a registry of all CF patients from IF region will be created and will be integrated into European CF registry. 8 children and one adult have already been entered in the register.
Formal negotiations are underway on the transfer of data from the Lviv Cystic Fibrosis Center for patients from Ivano-Frankivsk region. There are 15 patients with CF from Ivano-Frankivsk region, 13 children and 2 adults were registered.