Lysosomal Storage Diseases (LSDs) are rare, life-limiting conditions with profound psychological impacts on patients and families.
Mental health needs remain under-recognised despite persistent and complex challenges.
The UK LSD Collaborative conducted longitudinal research (2020–2024) to understand evolving mental health needs and service gaps.
Across five years of data, people affected by lysosomal storage diseases report persistent and evolving psychological distress. While access to support has improved, driven largely by patient organisations, mental health care remains fragmented, short-term, and poorly aligned with lived experience.
Mental health must become a core component of treatment, with sustained, tailored support for patients and caregivers.
