Mission & Activities
Our Vision To improve the life expectancy and the quality of life of cystic fibrosis patients and support the patients and their families.
Our Mission: provides better access to care, a better quality of life and longer life for every child and adult living with cystic fibrosis in Turkey and support the patients and families.
Our Goals
- To contribute the process for building well equipped Cystic Fibrosis Centers
- To improve the access to the medications and devices used in CF treatment
- To promote optimal diagnosis and treatment of CF in each city of Turkey
- To contribute the mechanism of newborn screening process (started on the 1st of January 2015)
- To organise meetings in more cities to educate and support the CF patients and families
- To raise public awareness for CF.
Our activities
- Inform parents through publications of a guide, Facebook exchange, family education meetings with the presentations of doctors,email and phone exchanges.
- Raise in kind donation from pharmaceutical companies to provided with the necessary materials to doctors, who give them to patients who cant offer them
- Advocacy with the Ministry of health for a better recognition of the desease (now identified at birth since Jan 2015)
- Develop cooperation with international organisations to keep informed about latest developments (in treatment and in communication)
- Active participation to health congress to increase the awareness among care givers(health professions)
- Develop awareness of the general public around the disease through press interview (Ayse Arman), a national day of Kistik Fibrosis and exhibition (NEFES/UMUT)
Main figures & Metrics
| # engagement on Facebook | # of members | # of seminars organised | Revenues | Expenses | ||
| 2013 | ||||||
| 2014 | ||||||
| 2015 | 180.000TL | 170.000TL | ||||
We've attended 19 national and international congresses and education programmes, organised 17 family education meetings in 7 cities. We answer at least 15 phone calls, 10 questions on Facebook page in a week and 5 mails.
There are 13000 follower on official face page and 2000 active attendee on group page sharing at least 5 topics each day.
Source of funds
We have partnership with the largest pharmaceutical and other companies like Roche, Abbot and Novartis. They are supporting us financially and also in kind in our activities. We have also some individual donors and membership fees. We get support from the local governance such as municipalities for our meetings.
