President Stevo Pendarovski received today representatives of the Association for Cystic Fibrosis.
At the meeting, the representatives of the Association emphasized that they want to be provided with modular therapy, which in some neighboring countries is already available for patients with cystic fibrosis. The association also pointed out the need for the diagnosis of Cystic Fibrosis to be again included to the rare diseases register. This, as they pointed out, will facilitate the access of the patients to the appropriate medicines.
In the talks with President Pendarovski, the representatives of the Association shared the other challenges and problems they face.
They pointed out the need for continuous and uninterrupted access to standard therapy, procurement of medical devices – inhalers and vitamin supplements.
Expressing support for their efforts to actualize and raise awareness of this disease, President Pendarovski stressed the need for engagement of all relevant institutions in order to provide appropriate treatment to patients, in accordance with world trends.
In that regard, President Pendarovski emphasized the contribution of the Association, which continuously helps these citizens, both in dealing with their illness and the series of uncertainties arising thereof.