Knoll, E. (2026). Adults with sickle-cells in a migration-driven rare disease setting: Therapeutic remoteness and graphic medicine in Austria in Social Sciences & Medicine, Volume 388, January 2026, 118723, from https://doi.org/10.1016/j.socscimed.2025.118723

Abstract
When hemoglobinopathies, notably thalassemias and sickle-cell disease move from countries with a higher prevalence to central and northern Europe these genetic conditions become particularly rare. In such a migration-driven rare disease setting, people with a hemoglobinopathy, their partners and care-givers or carriers of the genetic variation find themselves “remote” from biomedical expertise, socio-cultural disease awareness and biosociality. Yet, rare disease support initiatives and rare disease patient activism in central and northern Europe often lack a diverse ethnic, cultural, linguistic and biosocial presence. Moreover, progress in clinical and self-management has allowed hemoglobinopathies to change from previously fatal pediatric diagnoses into care-intensive chronic conditions. Since rare inherited blood disorders start in early childhood, however, these conditions still are firmly embedded in pediatrics. These new generations of adults living with a hemoglobinopathy thus also find themselves remote to the pediatric expertise with rare diseases.
This article proposes the notion of “therapeutic remoteness” with its spatial and temporal dimensions, to address the understudied rare disease–migration intersections and the often overlooked biosocial challenges adults with a rare disease are struggling with. An Austrian case study demonstrates therapeutic remoteness in its two dimensions. Focusing on a book project by a hemoglobinopathy patient advocacy group in Vienna, this article also scrutinizes the potential of visual story telling as a beneficial medium in the rare disease-migration nexus.

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