Cystic Fibrosis Patient and Family Association of Turkey

The 14th Changemaker of the 10th season of the Sabancı Foundation Turkey’s Changemakers program is the Cystic Fibrosis Patient and Family Association of Turkey (KİFDER), which works to improve the lives of Cystic Fibrosis patients and their families, and to increase society’s awareness of the disease.

Cystic Fibrosis, which is an inherited disease, affects many organs and causes dysfunctions because all secretions of the body are thick and sticky due to a genetic mutation. Mucus builds up in the ducts of organs such as the lung, pancreas, liver and intestines, causing clogging, infections and damage. Today in Turkey, in addition to the 3,500 patients that are known and tracked, there’s an estimated 20 thousand people struggling with this disease together with those who have not yet been detected.  

KİFDER was established in 2012 by Cystic Fibrosis patients and their families. The association works to both improve the lives of patients and their relatives, and to raise the awareness of public and health workers. In addition, they collaborate with the government and other relevant stakeholders to make therapies and devices accessible that contribute to the quality of life and life span of patients.

Thanks to the association’s efforts to introduce Cystic Fibrosis to the newborn screening program, the Cystic Fibrosis test is being performed on all newborns since 2015. Also, after the meetings conducted by the association, the Ministry of Health removed the contribution fees of many drugs necessary for treatment. KİFDER, which has the current objective of establishing fully equipped diagnostic and treatment centers throughout Turkey bringing together experts in the field, is both informing families and making doctors more accessible with regular family gatherings in various cities.

The Cystic Fibrosis Patient and Family Association of Turkey has increased awareness about the disease. It gave trainings to patient relatives to improve their quality of lives. It supported the acceleration of medicine procurement and treatment processes. It also worked to add the Cystic Fibrosis test to newborn screenings. By helping prolong the life span of patients, it made a huge difference in the lives of both Cystic Fibrosis patients and their families.

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