Specialised centers and organizations

Ερώτηση

I am a student and am writing my final thesis on the topic of Quality of Life for Adolescents and Adults with CF. I would like to ask whether you can advise me where I can find an overview or more detailed information about all specialised centres and organisations related to CF? I have only found a fraction of this information on the internet. Thank you for your answer, Anna M.

Απάντηση

Hello, a single source with all the information you require unfortunately does not exist. In the Czech Republic since 2007, a working group for cystic fibrosis has existed within the Czech Pediatric Society ČLS JEP. Since 2005, a section for adult patients with cystic fibrosis has operated in the Czech Pneumological and Phtiseological Association ČLS JEP, see www.cls.cz. On the expert side, the criteria for centers providing CF care according to the standards of the European Cystic Fibrosis Society (ECFS) are fulfilled by the CF centers at the Charles University Motol Hospital in Prague, and in Hrádec Králové and Brno. In the Czech Republic, there is only one patient organisation for families and patients with CF – Klub nemocných CF [CF Club]. See more at www.cfklub.cz. Within Europe there are several associations focussing on CF. The main one is the European CF Society (ECFS) – see more at www.ecfs.eu. One of the first issues of the magazine Československá pediatrie in 2008 will be devoted in detail to issues related to cystic fibrosis.
Best regards, Jitka Brazova (project coordinator).

15.02.2008