Addressing psychosocial vulnerability in rare diseases: a call to action from a European expert consensus study.

ABSTRACT:

Background

Persons living with a rare disease (PLWRD) often encounter burdensome and stressful events that may severely affect their psychosocial vulnerability. There is an urgent need for psychosocial support in PLWRD. We aimed to reach consensus about the most prominent psychosocial needs in rare diseases and future research directions to develop adequate psychosocial support for rare diseases.

Methods

An adapted nominal group technique (NGT) session was conducted in Nijmegen (The Netherlands) with a European expert group of professionals working in the rare disease field. Seventeen participants from seven different European countries took part in the NGT session (seven researchers, two therapists, one patient representative, four clinicians/researchers, and three clinicia

SUBMITTER: Smits RM 

PROVIDER: S-EPMC12560521 | biostudies-literature | 2025 Oct

REPOSITORIES: biostudies-literature