Adults with sickle-cells in a migration-driven rare disease setting: Therapeutic remoteness and graphic medicine in Austria

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.