Rare disease education in Europe and beyond: time to act

People living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact that care systems are not sufficiently aligned with their needs and healthcare workforce (HWF) along their care pathways lacks competencies to efficiently tackle rare disease-specific challenges. Level of rare disease knowledge and awareness among the current and future HWF is insufficient.

Citation:
Tumiene B, Peters H, Melegh B, …….. Baynam G. Rare disease education in Europe and beyond: time to act. Orphanet J Rare Dis. 2022;17(1)

Keywords:
Highly-specialized knowledge; Interprofessional learning; Medical education and training; Patient empowerment; People living with rare disorders; Rare disease awareness; Social accountability.

Abstract:
People living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact that care systems are not sufficiently aligned with their needs and healthcare workforce (HWF) along their care pathways lacks competencies to efficiently tackle rare disease-specific challenges. Level of rare disease knowledge and awareness among the current and future HWF is insufficient.