That’s when I realized: you have to do something. Coming of age with a rare inherited blood disorder in Austria”
Ośrodek Badań Społecznych nad Chorobami Rzadkimi serdecznie zaprasza na wystąpienie Dr Evy-Marii Knoll (senior researcher, ISA, Austrian Academy of Sciences) w dn. 23.06.2026 w ramach cyklu wykładów pt. “Transition in Rare Diseases”.
Tytuł wykładu: “That’s when I realized: you have to do something. Coming of age with a rare inherited blood disorder in Austria”
Serdecznie zapraszamy w dn. 23.06.2026 do Pałacu Staszica (s. 161) w godz. 14:00-15:30
Wykład organizowany jest w ramach wspólnego projektu realizowanego przez IFiS PAN i ISA Austrian Academy of Sciences.
Abstrakt: In this talk, I will start from the useful distinction between the lengthy and multidimensional process of transition and the factual transfer from pediatric to adult health care settings. Focusing on the ethnographic case of a young man living with the rare inherited blood disorder thalassaemia in Austria I will illustrate the transition / transfer distinction and go beyond. Living and growing older with a debilitating hemoglobinopathy holds more than just one challenging turning point, which requires our attention as social scientists.
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