Data and reflections on mental health in Huntington's disease.

Mental health in rare diseases. 
Data and reflections on mental health in Huntington's disease.

10 October, 2026

Today marks World Mental Health Day. The theme chosen by the World Health Organization for 2026—“Lived experiences heard: real voices, real change”—calls for recognizing the direct experiences of those involved as a fundamental tool for building mental health services and policies that are better suited to their needs.

For years, the LIRH Foundation has championed this perspective, giving a voice to people living with neurodegenerative diseases and their families in order to help raise awareness of the disease and all its implications—including those that affect the mental health of those involved.

According to data from the Rare Barometer survey published by EURORDIS-Rare Diseases Europe in June 2026—which involved over 9,000 respondents—70% of people living with rare diseases and their family members experience mental health issues such as depression, anxiety, loneliness, and suicidal thoughts. Against this backdrop, the most alarming finding to emerge from the survey is that the majority of respondents do not receive professional psychological support: indeed, while 73% reported needing psychological support in the preceding six months, fewer than half actually received it.

A nationwide survey conducted by LIRH on the needs of people with Huntington's disease reveals that psychological support is a key area requiring intervention and highlights the central importance of the psychological dimension for families. For 83.8% of the caregivers surveyed, psychiatric disorders are the primary source of concern—ranking above motor impairment.

A subsequent survey by the Foundation investigated the perceived knowledge of Huntington's disease among mental health professionals working within the National Health Service. The survey involved 180 respondents, comprising 125 psychotherapists (69.4%) and 55 psychiatrists (30.6%). Responses were received from 17 out of 20 regions. More than half of the sample (55.6%) rated their knowledge of the medical characteristics of Huntington's disease as poor or non-existent. 

Among psychotherapists, 69.6% rate their competence in providing psychotherapy to people with Huntington's disease as poor or nonexistent. Only 10.4% rate their level of competence as good or excellent. Among psychiatrists, 45.5% consider their specific pharmacological competence regarding Huntington's disease to be poor or nonexistent, 23.6% moderate, and 29.1% good or excellent.

It is therefore evident that mental health professionals require specific training on Huntington's disease, and that there is a need for more robust interdisciplinary networks and closer collaboration between mental health services and third-sector organizations, with the aim of improving the accessibility and quality of psychological and psychiatric support for the families involved.

We must not forget that, in the context of Huntington's disease, mental health encompasses both a psychiatric component—as a clinical aspect of the illness—and a psychological component; for children, the latter is primarily linked to the risk of having inherited the disease from a parent, while for parents, it relates to the realization that their affected partner may have passed the mutation on to their children.

The LIRH Foundation’s observatory—with which nine family associations and hundreds of connected families are affiliated—makes it possible to clearly identify psychological distress, stigma, social isolation, and the impact on quality of life, not to mention the fear of the future.

All these factors significantly compromise individuals' mental well-being.

Discussing mental health means making visible—and addressing—needs that too often remain unvoiced; needs stemming from psychological distress that is not always glaringly apparent. This is particularly true in the case of neurodegenerative diseases such as Huntington’s.

This is also reflected in the Manifesto for Huntington’s Disease—presented by the LIRH Foundation and signed in 2026 at the Ministry of Health—which, in its fifth point, emphasizes the need to acknowledge the presence of psychological distress and mental vulnerability, and, in its first point, highlights the importance of discussing Huntington’s disease more widely within both medical-professional and political spheres