Lived experiences of genetic diagnosis for rare disease patients: a qualitative interview study

Genetic diagnosis is often understood as a single event within the care pathway of rare disease patients. Legal, policy and ethical scholarship focusing on rare diseases and genetic information discusses quest...

Source: Orphanet Journal of Rare Diseases - February 14, 2024 Category: Internal Medicine Authors: Antonia Modelhart, Dominique Sturz, Lydia Kremslehner and Barbara Prainsack Tags: Research Source Type: research