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Resu l t s and d i scuss ion: In particular, the respondents experienced empo werment in terms of ‘exchanging information’ and ‘finding recognition.’ Thanks to the online group, they felt better prepared to meet with their doctors. They identified with other members of the group, and considered the information posted thereby to be understandable and valuable. The stories of other parents helped them realize they were not alone.

rocznik medyczny/polish annals of medicine

The Internet as an additional source of Information on rare illness. A Facebook support group for parents of children with craniosynostosis as a case study