Mental health & rare conditions

Beyond the patient: longitudinal insights into psychological wellbeing and caregiver burden in Lysosomal Storage Diseases.

Bogart (2021) Rare condition mental health issues are not being addressed.

Bogart et al. (2020) Relationship of rare disorder latent clusters to anxiety and depression symptoms.

Exploring the support sought by individuals online with Spinal Muscular Atrophy: A qualitative internet-mediated study

Kenny, Bogart et al. (2022) The importance of psychological support for parents and caregivers of children with a rare condition at diagnosis.  Kenny, Bogart et al.

Metabolic Support UK – Thoughts into actions. What is quality of life as defined by the community of people living with an inherited metabolic disorder?

NCVO and Fair Collective report, ‘The mental health crisis in small organisation leadership’

Partners for Access – Voices uncovered: Understanding mental health in rare diseases using social listening

Rare Disease UK – Living with a rare condition: The effect on mental health. (2018)

Rareminds – Rare Minds Matter: Mental health & rare diseases survey 2023 report

Social listening as a research tool for understanding mental health and rare conditions

Spencer-Tansley et al. (2022) Mental health care for rare conditions in the UK – recommendations from a quantitative survey & multi stakeholder workshop.

Sunniva Bean (2019) Let’s talk about mental health and rare conditions.

Uhlenbusch et al. (2019) Perceived burden in dealing with different rare conditions: a qualitative focus group study.

Genomics, genetics & mental health

Firth et al. (2022) A unique service: how an embedded psychology team can help patients and genetics clinicians within a clinical genetics service.

Lewis (2023) Genomic testing for rare condition diagnosis—where are we now, and where should we be heading? The reflections of a behavioural scientist.

Dolling et al. (2025) Fathers’ and Mothers’ support needs and support experiences after rapid genome sequencing.

Genomics, genetics & mental health

Firth et al. (2022) A unique service: how an embedded psychology team can help patients and genetics clinicians within a clinical genetics service.

Lewis (2023) Genomic testing for rare condition diagnosis—where are we now, and where should we be heading? The reflections of a behavioural scientist.