Denton and Reddish MP, Andrew Gwynne, joined campaigners and Parliamentarians for the launch of the report ‘Living with a rare condition: the effect on mental health’.

This report evolved from an inquiry conducted by the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions, which identified mental health as a key issue facing rare disease patients and carers. Attendees shared the significant impact rare disease can have on mental health, and described the unmet mental health needs of patients and carers who frequently struggle to access support around these issues.

The study was carried out to help develop a fuller, clearer picture of the relationship between rare disease and mental health. The findings, published ahead of UK Mental Health Awareness Week (14-20 May 2018), reveal that:

  • Living with a rare condition can have a huge impact, including anxiety, stress, low mood, emotional exhaustion and suicidal thoughts.
  • Many of the drivers of poor mental health reflect issues that are specific to managing a condition that is rare, and that patients/carers face challenges at many points during their journey from the onset of symptoms onwards.
  • Patients and carers can experience not being taken seriously by healthcare professionals, and sometimes being misdiagnosed with psychiatric illness, when trying to access support for their physical condition. This can have both physical and mental health implications.

Mind, the mental health charity, offers information about mental health and accessing support on their website They also provide information over the phone (0300 123 3393), by email or by text (86463). To read the full report, please visit:

Andrew Gwynne said:

“The work of the APPG and those who contributed to this report is incredibly important. The research shows that patients and carers are rarely asked about their mental health by healthcare professionals with around half never asked.


“I support Rare Diseases UK and their campaign for the development and implementation of an effective strategy for rare diseases in the UK.”

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