On the eve of World Rare Diseases Day, which is traditionally celebrated on February 28, a meeting of the Parliamentary Group for Rare Diseases was held in the Polish Parliament, accompanied by the opening of an exhibition prepared by the MukoKoalition entitled "My Life with Cystic Fibrosis. "My life with cystic fibrosis," which is the culmination of a drawing contest with the same title.
PATIENT WEEK
"My life with cystic fibrosis", or how the youngest see their everyday life
Published April 24, 2023 12:39
The youngest children struggling with cystic fibrosis were invited to the competition, which was held under the honorary patronage of Mrs. Barbara Dziuk. It was given to them to express in any artistic way the emotions accompanying them in their daily struggle with the disease. The winner of the contest - Igna¶ Pietkiewicz designed the board game "Healthy Lungs" for 2-4 players from 5 years old. He came to the exhibition opening and tour of the Polish Parliament with his brother, mother and grandfather.
It is not insignificant that both the meeting itself and the opening of the "My Life with Cystic Fibrosis" exhibition took place on the occasion of the first anniversary of the reimbursement of causative drugs, as well as during the Ministry of Health's consideration of the reimbursement application for the extension of modern treatment to a group of younger children (6+) and the expansion of mutations eligible for treatment with modulators, as indicated by the European Medicines Agency (EMA).
Today we invite you to look at life with cystic fibrosis through the eyes of the youngest people who have faced an uneven opponent.
